Tag Archives: fluoroquinolone

New Study Finds that Ciprofloxacin Depletes Mitochondrial DNA

An excellent article about the effects of ciprofloxacin (a fluoroquinolone antibiotic) on mitochondrial DNA was recently published in the journal, Nucleic Acids Research. The article, Ciprofloxacin impairs mitochondrial DNA replication initiation through inhibition of Topoisomerase 2, by Anu Hangas, Koit Aasumets, Nina J Kekäläinen, Mika Paloheinä, Jaakko L Pohjoismäki, Joachim M Gerhold, and Steffi Goffart, gives a great amount of insight into the damage that ciprofloxacin does to mitochondria, and I recommend that you read it (linked through the article title). I’m going to go over the article in this post, and point out some of the more interesting findings.

First, a bit of background information to help readers to understand the article.

Mitochondria are the energy centers of our cells. There are over ten million billion mitochondria in the human body (Lane p. 1). Each cell (with a few exceptions) contains an average of 300-400 mitochondria that are responsible for generating cellular energy through a process called ATP (Adenosine Triphosphate). Mitochondria regulate energy production, aging, epigenetic signaling between and within cells and many other important functions. Proper functioning of mitochondria is vital, and when mitochondria are not operating properly, a wide range of disease states can ensue (2).

Mitochondria have their own DNA (mtDNA) that is separate from (though it interacts with) nuclear DNA. The structure of mtDNA is similar to that of bacterial DNA, and it is widely thought that mitochondria descended from ancient bacteria. The similarities between bacteria and mitochondria should make everyone take pause to think about how antibiotics of all kinds are affecting mitochondrial health. This post, and the article that it is based on, only focuses on the effects of ciprofloxacin, a fluoroquinolone antibiotic, on mitochondrial health, but if you want to read about the effects of other antibiotics on mitochondria, the article “Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells” is a great place to start.

There are enzymes in our cells called topoisomerases. According to the wikipedia article for topoisomerase:

Topoisomerases are enzymes that participate in the overwinding or underwinding of DNA. The winding problem of DNA arises due to the intertwined nature of its double-helical structure. During DNA replication and transcription, DNA becomes overwound ahead of a replication fork. If left unabated, this torsion would eventually stop the ability of DNA or RNA polymerases involved in these processes to continue down the DNA strand.

In order to prevent and correct these types of topological problems caused by the double helix, topoisomerases bind to DNA and cut the phosphate backbone of either one or both the DNA strands. This intermediate break allows the DNA to be untangled or unwound, and, at the end of these processes, the DNA backbone is resealed again. Since the overall chemical composition and connectivity of the DNA do not change, the DNA substrate and product are chemical isomers, differing only in their global topology, resulting in the name for these enzymes. Topoisomerases are isomerase enzymes that act on the topology of DNA.[1]

Bacterial topoisomerases and human topoisomerases proceed via similar mechanisms for managing DNA supercoils.

The mechanism of action for all fuoroquinolones is that they are topoisomerase interruptors. The FDA warning label for ciprofloxacin states that the mechanism of action for ciprofloxacin is, “The bactericidal action of ciprofloxacin results from inhibition of the enzymes topoisomerase II (DNA gyrase) and topoisomerase IV (both Type II topoisomerases), which are required for bacterial DNA replication, transcription, repair, and recombination.”

Here is a video that describes how fluoroquinolones work, and how they interrupt topoisomerase and thus interrupt the process of bacterial (and mitochondrial, as we shall discuss below) DNA replication.

I have argued, and I believe, that EVERY drug that is a topoisomerase interruptor, should be thought of as a chemotherapy drug. All other topoisomerase interrupting drugs ARE chemo drugs. But fluoroquinolones are thought of as antibiotics, and handed out as if they are inconsequential. They are extremely consequential though, and they are hurting too many people. More information on fluoroquinolones being chemo drugs can be found in the post, “Cipro, Levaquin and Avelox are Chemo Drugs.”

Now to highlight some of the important parts of Ciprofloxacin impairs mitochondrial DNA replication initiation through inhibition of Topoisomerase 2.

The abstract of the article, Ciprofloxacin impairs mitochondrial DNA replication initiation through inhibition of Topoisomerase 2, notes that:

“Loss of Top2β or its inhibition by ciprofloxacin results in accumulation of positively supercoiled mtDNA, followed by cessation of mitochondrial transcription and replication initiation, causing depletion of mtDNA copy number. These mitochondrial effects block both cell proliferation and differentiation, possibly explaining some of the side effects associated with fluoroquinolone antibiotics.”

When you look into the multiple roles of mitochondria–from controlling cellular energy production to aging, and the links between mitochondrial damage and various multi-symptom chronic illnesses (from ME/CFS to autism to autoimmune diseases), yes, most definitely, the damaging effects of fluoroquinolones on mitochondria can certainly explain many, if not all, of the side effects associated with fluoroquinolone antibiotics.

The study found that, “In agreement with the in vitro assay, also HeLa cells treated with ciprofloxacin or doxorubicin rapidly accumulated supercoiled mtDNA (Figure 3A).”

This accumulation of supercoiled mtDNA led to a “change in topology” of the mitochondria, and a depletion of the mitochondrial DNA. Per the article:

“The change in topology caused by the inhibition of mitochondrial Top2 was connected with an impairment of mtDNA replication. 7S DNA, the 650bp ssDNA strand incorporated at the D-loop region of mtDNA, was rapidly depleted upon ciprofloxacin, ethidium bromide and doxorubicin treatment.”

Ciprofloxacin treatment not only depleted mtDNA, it also inhibited mtDNA synthesis:

“ciprofloxacin treatment reduced mtDNA copy number by 18% within 3 days (Figure 3C). As at the same time the growth rate of ciprofloxacin-treated cells was strongly reduced doubling time 170.2 h versus 22.7 h in untreated controls (Supplementary Figure S4), the observed depletion reflects a nearly complete inhibition of mtDNA synthesis.”

Ciprofloxacin treatment, and the resulting supercoiled mtDNA, also stalled mtDNA replication.

“Ciprofloxacin caused a strong reduction in these intermediates already after 2 h treatment (Figure 3E). After 20 h, this effect was clearly enhanced, with the strand-asynchronous intermediates being replaced by strand-coupled replication intermediates, a hallmark of mtDNA replication stalling (25,31–33).”

It was also found that ciprofloxacin inhibited the increase of mtDNA that typically comes with building muscle. It was found that:

“The impairment of mtDNA maintenance by ciprofloxacin not only disturbed cellular proliferation and the physiological increase of mtDNA copy number during muscle maturation, it also effectively impaired the fusion of confluent myoblasts to multinuclear myotubes (Figure 4E) and cell differentiation as indicated by the reduced expression of the heavy chain of Myosin II, a marker of differentiated skeletal muscle (Figure 4F).”

In the paragraph that the above quote was taken from, it was stated that “This increase (of mtDNA when muscle matures) was completely abolished by ciprofloxacin.” I’ve said it multiple times before, but, again, fluoroquinolones should NEVER be given to athletes (or anyone who values their ability to move, or have their heart beat).

In the article’s discussion section, this summary of the demonstrated damage done by ciprofloxacin was given:

“Ciprofloxacin caused a dramatic effect on mtDNA topology, blocking replication initiation, reducing copy number and inhibiting mitochondrial transcription (Figures 2B3AE and 4A). Ciprofloxacin, the third most commonly used antibacterial antibiotic, stops the cleavage/re-ligation reaction of type II topoisomerases midway, generating double-strand breaks, persistent protein–DNA adducts and reduces also the overall enzyme activity (30). Its toxicity to mitochondria has been reported in various studies, suggesting a broad range of mechanisms including topoisomerase inhibition, oxidative stress, altered calcium handling and photosensitization (38–40). In our study, we observed ciprofloxacin to clearly reduce Top2 topoisomerase activity both in vitro and in vivo, but did not find any indication of increased mtDNA double-strand breaks (Figure 3AC). However, ciprofloxacin did impair the overall mtDNA integrity in post-mitotic cells (Figure 4D). As our detection method (long-range PCR) does not distinguish between strand-breaks, abasic sites or base alterations inhibiting Taq polymerase, the observed effect might be caused by oxidative damage, which fluoroquinolones have been reported to induce in a variety of cell types (41,42).”

And the study’s authors also surmise that many of the severe adverse effects of fluoroquinolones are due to the depletion of mtDNA caused by the drugs:

“The severe side effects of ciprofloxacin and other fluoroquinolones include tendinopathies such as tendon rupture, joint inflammation, muscle weakness, central and peripheral neuropathies, epilepsy and psychological symptoms such as depression. These symptoms have been proposed to be connected to enhanced oxidative stress (42,54,55), but the molecular mechanism remained unclear. The reduction of mtDNA copy number and mitochondrial transcription caused by the altered topology of mtDNA might result in severe dysregulation of the electron transport chain complexes, as known to occur under ciprofloxacin treatment (56), lead to respiratory chain dysfunction and cause the observed enhanced oxidative stress.

Ciprofloxacin has also been reported to interfere with physiologically significant cell differentiation processes, such as spermatogenesis (57), brain development (41), bone mineralization (58), as well as to induce renal toxicity and heart arrhythmia (59). While the molecular mechanisms of these adverse effects are yet unclear, mitochondria play a central role in all of these physiological processes, making mitochondrial impairment a likely culprit for the disturbed cellular physiology.”

Throughout the article, the effects of ciprofloxacin are compared to the effects of another topoisomerase interrupting drug, doxorubicin. Per its wikipedia post, Doxorubicin “is a chemotherapy medication used to treat cancer.[3] This includes breast cancer, bladder cancer, Kaposi’s sarcoma, lymphoma, and acute lymphocytic leukemia.” The authors of Ciprofloxacin impairs mitochondrial DNA replication initiation through inhibition of Topoisomerase 2 noted that, “Interestingly, doxorubicin had a similar, but milder inhibitory effect on mtDNA replication than ciprofloxacin.” Why, yes, it is interesting that a drug that is marketed and dispensed as an antibiotic is more damaging than a similar drug that is marketed and dispensed as a chemotherapy drug. It’s very interesting indeed. It is also interesting that another topoisomerase interrupting chemotherapeutic drug, topotecan, was found to increase the expression of genes related to autism (“Topoisomerases facilitate transcription of long genes linked to autism“).

The Ciprofloxacin impairs mitochondrial DNA replication initiation through inhibition of Topoisomerase 2, authors conclude their article with two points. First, that very little is known about the consequences of mtDNA supercoiling. “Although central in bacterial genome maintenance, the whole phenomena of DNA supercoiling and its functional implications are virtually unstudied in mitochondria and calls for future research.” Yes, future research is needed, and better late than never. But nalidixic acid, the backbone of all fluoroquinolone antibiotics, was first used clinically in 1967. Shame on the medical and scientific communities for not studying the effects of fluoroquinolones on mtDNA earlier. We should have known more about the consequences of these drugs long before millions of prescriptions had been doled out, and millions of people affected.

Second, the authors of Ciprofloxacin impairs mitochondrial DNA replication initiation through inhibition of Topoisomerase 2 conclude by stating, “As fluoroquinolone antibiotics are widely used and effective drugs against a number of important bacterial pathogens, their dosage, systemic enrichment and side-effects should be reviewed in the mitochondrial context, and their clinical use should be considered with great care.” Yes, indeed, the effects of fluoroquinolones on mitochondria should be given long, hard, thoughtful consideration by every doctor, pharmacist, scientist, and every relevant person in the FDA and other regulatory agencies.

Ciprofloxacin impairs mitochondrial DNA replication initiation through inhibition of Topoisomerase 2 is an eye-opening article with groundbreaking research. Yes, more research needs to be done. But the research that has been done, that is described in the article, is greatly appreciated. Thank you to all the authors – Anu Hangas, Koit Aasumets, Nina J Kekäläinen, Mika Paloheinä, Jaakko L Pohjoismäki, Joachim M Gerhold, and Steffi Goffart.

 

A Delicate Balance: Fluoroquinolones Disrupt Cellular Homeostasis

This post was inspired by, “My Father’s Body, at Rest and in Motion: His systems were failing. The challenge was to understand what had sustained them for so long.” by Siddhartha Mukherjee, published in the January 8, 2018 issue of The New Yorker. (When not noted otherwise, all quotes are from “My Father’s Body, at Rest and in Motion.”) It’s a poignant personal account of Dr. Mukherjee’s father’s decline and death. It is also about the beautiful and delicate balance that is life. I cannot do the article justice in taking excerpts from it, and I suggest that you read it yourself. It is only related to fluoroquinolone toxicity peripherally (if at all), but I think there are lessons to be learned about fluoroquinolone toxicity within it. There are certainly lessons about life, and death, within it, and I recommend it to anyone who likes thoughtful, New-Yorker-esque articles.

I never thought about cellular homeostasis before I got floxed. Who, other than biochemists and med students, thinks about cellular homeostasis?

“There’s a glassy transparency to things around us that work, made visible only when the glass is cracked and fissured. Look, it’s nothing. To dwell inside a well-functioning machine is to be largely unaware of its functioning. That’s its gift, and we accept it thoughtlessly, ungratefully, unknowingly.”

Homeostasis, the ability to maintain internal consistency, is crucial for life. Indeed, “Homeostasis, the capacity to maintain a functional equilibrium, would turn out to be one of the cardinal principles of all organisms; it’s often described as one of the defining principles of life.” The dance within our cells that maintains homeostasis, that keeps us functioning properly, that keeps each feedback and feed-forward loop operating optimally, is necessary for health, and for maintaining life.

Fluoroquinolones disrupt cellular mineral levels, the balance of antioxidants and ROS within cells, hormonal balance, gut biome balance, and more. They cause mitochondrial apoptosis, and nervous system dysfunction. Fluoroquinolones disrupt homeostasis—the delicate balance and intricate dance of keeping minerals, hormones, vitamins, etc. in-balance within our cells. Fluoroquinolones disrupt crucial functions, and in doing so, throw a wrench in health, and in life.

What happens when homeostasis is disrupted by fluoroquinolones?

The answer seems to depend on multiple factors. How many physiological processes were disrupted? To what extent? Where? What feedback and feed-forward loops were triggered? What is the downstream damage? What are the genetic (and other) predispositions of the individual who has been hurt? What is the ROS/MMP burden on the body/cell at the time that a person takes ciprofloxacin or levofloxacin? What are the hormone levels at the time that a person takes the pill(s)? What are the compensating factors that make a person stronger or more resilient? What makes someone vulnerable? Who? What? How?

In theory, we can know the answers to these questions. In practice though, we can’t, and a certain amount of luck, or lack thereof, enters the equation. We cannot know the answers to those questions before we take any pharmaceutical, and thus, we are playing Russian Roulette with our bodies when we take drugs like fluoroquinolones that disrupt multiple systems, and cause disrupted cellular homeostasis.

“Indeed, once self-regulation fails, complex systems of all kinds can be claimed by a version of this process, sometimes called a failure cascade. A storm-battered tree takes down a transmission line; the increased load causes another network component to fail, further increasing the load, turning a local outage into a regional blackout. The failure of one division in one bank can trigger a global cataclysm. That’s a failure cascade.”

Perhaps the difference between a person who takes multiple fluoroquinolone prescriptions without notable effect and a person who experiences severe toxicity and even death, is whether or not the fluoroquinolones throw a person into a “failure cascade.” Homeostasis can be disturbed a bit with no notable effect (our healing and stability mechanisms kick in), but if it is disturbed enough to throw a person into a “failure cascade” everything goes wrong in his or her body, and it feels as if a bomb has exploded.

“Yet maintenance defies measurement; it’s the glass pane that’s visible only when it cracks. In the several months of my father’s decline, hospitalization, and death, we recorded the values of hundreds of things in his body: potassium, temperature, breathing rate, creatinine, bicarbonate, chloride, the oxygen saturation of his blood, the output of his urine. What we didn’t measure—couldn’t measure—was how hard his body was working to bestill these values, how much “unnatural vigilance” was required to keep things steady, and how deeply his physiology must have collapsed when the numbers finally dipped into abnormalcy. We had, in short, no real measure of homeostatic resilience, of physiological reserve.”

In “My Father’s Body, at Rest and in Motion” Dr. Mukherjee is writing about his elderly father, whose body is failing because of old-age and a bad fall. As difficult as it is for the elderly people (and their loved ones) who enter a “failure cascade” due to old-age and/or trauma, it is expected that old-age brings bodily failures, and that some of those failures will lead to other failures. We expect that time will disrupt homeostasis and that our cellular functions will eventually fail. But we don’t expect that a drug—a popular antibiotic no less—will trigger a “failure cascade.” They do though. Ciprofloxacin, levofloxacin, moxifloxacin, and other fluoroquinolones trigger multi-symptom, chronic, disabling illness—often in young people.

How do people who have been hurt by fluoroquinolones get back to a healthy state of cellular homeostasis? How do you stop the feedback loops that are leading to the “failure cascade?” I don’t know the answer for any individual, and nothing on this site should be interpreted as medical advice (I’m not a doctor), but some basic advice, that seems to have helped other people, can be found in the post, I’m Floxed, Now What? 

It struck me as I read “My Father’s Body, at Rest and in Motion” just how little we (collectively–including doctors and scientists) know about health, or even life (not how to live life, but the actual process of life, and our cellular processes that are at the center of life). Health, healing, and even life, are things that are easy to take for granted, and to fail to study or even notice, until they go away or are threatened. I barely thought about my health, much less my cellular homeostasis, until it was threatened by ciprofloxacin. After I got “floxed” I had a reason to notice how delicate and precarious my health was. Health and its basis of homeostasis are both robust and delicate. Our feedback and feed-forward loops work as they should–until they don’t. Without homeostasis, without the processes that compose life working the way they should, life ceases. Fluoroquinolones disrupt homeostasis, and cause many physiological systems to go hay-wire. The damage that fluoroquinolones do can be severe–particularly if a “failure cascade” is triggered. With every fluoroquinolone pill taken, damage is done, and the risk of a “failure cascade” occurs. Nothing is worth risking a “failure cascade” if that cascade results in death, and very few “floxies” would say that treatment of their infection was worth the pain and disability caused by fluoroquinolones. We may not fully understand the delicate balance of life, or the processes occurring in our cells, but they are important none-the-less, and throwing a wrench in them with fluoroquinolones is both damaging and foolish. 

 

 

A Fluoroquinolone Toxicity Post Goes Viral

A post about fluoroquinolone toxicity, i.e. getting “floxed,” i.e. getting “ruined” by Cipro, has gone viral.

Check it out!

This antibiotic will ruin you.

It has been shared more than 10,000 times on Facebook (probably closer to 20,000 – the web site stops updating each share after 10,000 shares) – including more than 6,000 shares from The Fluoroquinolone Wall of Pain Facebook page.

It is resonating with thousands of people, who are not only reading it, they are sharing it. It has been viewed by MILLIONS of people. The author, Amy, posted on her facebook page that, in just a couple days, the post has been viewed more than 4 million times. That’s amazing!

Please shareThis antibiotic will ruin you with your friends and family. It’s getting through to people. It’s informing people. It’s connecting people.

Thank you, Amy, for sharing your journey and your story, and for doing it in a way that has resonated with so many people!

This post has done more to get the word out about the dangers of fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, Floxin/ofloxacin, and a few others) than 90% of the other posts, media stories, etc. that have been produced. It has gone viral. It has gone so viral that people are writing about it going viral, including WOMAN SAYS FLOUROQUINOLONES ANTIBIOTICS ‘WILL RUIN YOU,’ GETS 40K FACEBOOK LIKES on Inquistr.com (which, I believe is part of Buzzfeed), and, obviously, this post.

Viral posts aren’t something that happens every day, so, CONGRATULATIONS, Amy! Most importantly, her viral post, This antibiotic will ruin you, is increasing awareness about fluoroquinolone toxicity.

This antibiotic will ruin you has more than 1,000 comments on it – many of which are from fellow “floxies.” Amy has stated (on facebook) that she wants to respond to all of them, but that she’s drowning in the volume of comments. Can you, my friends in the “floxie” community, who are experts in fluoroquinolone toxicity, please help her? Please take some time to respond to some of the people who have commented on This antibiotic will ruin you. Your help will be appreciated!

The viral nature of the post has given us a window of opportunity to inform people about fluoroquinolone toxicity, and to support those who are going through it who didn’t realize that there is a support network available. Any help that you can provide in further spreading the post, and helping to answer comments on the post, will help. Thank you!

 

 

EMA to review persistence of side effects known to occur with quinolone and fluoroquinolone antibiotics

I hope I’m not too late in posting this. The following notice was published by the European Medicines Agency (EMA) in February, 2017 (and I’m posting it in March). I want to encourage all of my European “floxie” friends to contact the EMA to report your reaction, and to inquire about testifying. Even if testifying isn’t a possibility, we should all pay attention to what the EMA’s Pharmacovigilance Risk Assessment Committee (PRAC) decides.

The contact person listed on the EMA notice is:

Monika Benstetter
Tel. +44 (0)20 3660 8427
E-mail: press@ema.europa.eu

HOWEVER, the EMA has given us the contact information for the UK representatives of PRAC (the EMA’s Pharmacovigilance Risk Assessment Committee). Please contact them instead. They are:

julie.williams@mhra.gsi.gov.uk
and
patrick.batty@mhra.gsi.gov.uk

European floxie friends, please reach out to Ms. Benstetter to share your story, or to find out who you should share your story with. The patient testimony at the FDA hearing was moving, powerful, and I believe that it made a difference. Hopefully patient testimony will be allowed by the EMA, and it will make a difference too.

Here is the EMA announcement:

EMA to review persistence of side effects known to occur with quinolone and fluoroquinolone antibiotics: Review to focus on long-lasting effects mainly affecting musculoskeletal and nervous systems

The European Medicines Agency (EMA) is reviewing systemic and inhaled quinolone and fluoroquinolone antibiotics to evaluate the persistence of serious side effects mainly affecting muscles, joints and the nervous system. These side effects are of particular importance when the medicines are used for less severe infections.

The review is at the request of the German medicines authority (BfArM) following reports of longlasting side effects in the national safety database and the published literature. There has been no previous EU-wide review specifically focusing on the persistence of the side effects, but the side effects themselves are known and covered in the EU prescribing information for these medicines.

EMA’s Pharmacovigilance Risk Assessment Committee (PRAC) will now evaluate all available data and determine whether there is a need to introduce new measures to minimise these risks or modify how the medicines are used.

Quinolones and fluoroquinolones are widely prescribed in the EU and are important options for treating serious, life-threatening bacterial infections. Healthcare professionals using these medicines should continue to follow the official prescribing information.

Patients who have any questions about their treatment should speak to their doctor.

More about the medicines

Quinolones and fluoroquinolones are a class of broad spectrum antibiotics that are active against so-called Gram-negative and Gram-positive bacteria.

The review covers the following medicines: cinoxacin, ciprofloxacin, enoxacin, flumequine, levofloxacin, lomefloxacin, moxifloxacin, nalidixic acid, norfloxacin, ofloxacin, pefloxacin, pipemidic acid, prulifloxacin and rufloxacin.

More about the procedure

The review of quinolone and fluoroquinolone antibiotics was initiated on 9 February 2017 at the request of German medicines authority (BfArM), under Article 31 of Directive 2001/83/EC.

The review will be carried out by the Pharmacovigilance Risk Assessment Committee (PRAC), the Committee responsible for the evaluation of safety issues for human medicines, which will issue recommendations. The PRAC recommendations will then be sent to the Committee for Medicinal Products for Human Use (CHMP), responsible for questions concerning medicines for human use, which will adopt the Agency’s opinion. The final stage of the review procedure is the adoption by the European Commission of a legally binding decision applicable in all EU Member States.

I hope that the EMA’s Pharmacovigilance Risk Assessment Committee (PRAC) decides to acknowledge the serious adverse reactions caused by fluoroquinolones, and that they restrict the use of fluoroquinolones in Europe.

European friends, if you hear of anything that you can do to push the EMA’s PRAC to to decide to restrict fluoroquinolone use in Europe, please let me know. I’ll update this post if I hear anything new. Thank you!

March 2018 Update

The following is from the EMA Press Release, “Meeting highlights from the Pharmacovigilance Risk Assessment Committee (PRAC) 5-8 March 2018

Public hearing to be organised for quinolone and fluoroquinolone antibiotics

The PRAC decided to organise a public hearing as part of its review of quinolone and fluoroquinolone antibiotics, to listen directly to the experience of interested parties with these medicines, so this can be taken into account in the Committee’s recommendation.

In February 2017 the PRAC started a review of oral, injectable and inhaled quinolone and fluoroquinolone antibiotics to evaluate the persistence of rare serious side effects mainly affecting muscles, joints and the nervous system, some of which may be of long duration. As the review progressed, EMA observed an increased public interest in the safety of these medicines. The PRAC, taking into account this increased interest, considered it would be useful to hold a hearing to better understand the public’s views on the risks associated with these antibiotics and the feasibility of certain measures to optimise their safe use.

This public hearing will take place during the Committee’s meeting of June 2018. Further information, including a summary of the safety concerns, a list of specific questions on which information from the public is sought, as well as practical information on how to participate and an application form will be published soon on the Agency’s website.

It is the second time that the PRAC will hold a public hearing during a safety review of a medicine, following the first public hearing held in September 2017 to inform the review of valproate – a medicine that treats epilepsy, bipolar disorder and migraine.

If you would like to attend the public hearing, please see THIS DOCUMENT for instructions. Thank you!

April 2018 Update

The following email was received from the EMA:

Dear All,

The European Medicines Agency (EMA) would like to let you know it is going to hold a Public Hearing on 13 June 2018 at its offices in London.

The hearing is part of an ongoing review of Quinolone and fluoroquinolone medicines being carried out by the Agency’s safety committee – the Pharmacovigilance Risk Assessment Committee (PRAC).

The EMA is reviewing these antibiotics due to reports of serious persistent side effects mainly affecting muscles, joints and the nervous system.

The PRAC would like to hear the public’s view on acceptability of risks associated with quinolones and fluoroquinolones in both mild and severe infections, and to explore what further measures could be taken to ensure that these antibiotics are used as safely as possible.

The public hearing will focus on several questions on which the PRAC is seeking the views of different stakeholders who have experience in the use of these medicines within Europe (e.g. patients, consumers, carers, general practitioners/family physicians, urologists, respiratory specialists, pharmacists, nurses).

The questions, together with an overview of the safety issues are published on the EMA website together with a link to the electronic application form, guidance documents and a video.

Those wishing to participate at the hearing need to register in advance and may request to speak in front of the Committee or simply observe the proceedings. The hearing will also be broadcast live via our website.

The deadline for applications is 30 April 2018.

Please share this email with anyone else who might be interested to participate, and if you have any questions please do not hesitate to contact us at:PublicHearings@ema.europa.eu

If you are available, please participate. Thank you!


 

 

 

Fluoroquinolone Warning Labels to be Updated in Canada

Health Canada, the department of the government of Canada with responsibility for national public health (like the U.S. Food and Drug Administration) has “carried out a review of the potential risk of persistent and disabling side effects linked to the use of fluoroquinolones. The review was triggered by a benefit and safety review done by the United States Food and Drug Administration (FDA) on systemic (taken by mouth or by injection) fluoroquinolone drugs.”

The Canadian Review of fluoroquinolones concluded that (SOURCE):

  • Health Canada’s review concluded that some of the known side effects, specifically tendonitis/tendinopathy, peripheral neuropathy and central nervous system disorders, already linked to the use of fluoroquinolones, may be persistent and/or disabling. Given the high use of fluoroquinolones in Canada and the information reviewed, these side effects are considered rare.
  • Health Canada recommended that the safety information for all fluoroquinolone products be updated to include information about this rare but serious risk. Health Canada is working with manufacturers to update the safety information of all systemic (taken by mouth or by injection) fluoroquinolone products marketed in Canada. In addition, an Information Update and a Health Care Professional Letter will be published and distributed to further inform Canadians and healthcare professionals about this risk.
  • Health Canada is working with the Drug Safety and Effectiveness Network (DSEN) and the Canadian Agency for Drugs and Technologies in Health (CADTH) to conduct additional studies to better understand the use of fluoroquinolones in Canada.
  • On October 6, 2016, Health Canada brought together a Scientific Advisory Panel on Anti-Infective Therapies to discuss the risks associated with the use of fluoroquinolones. The panel recommended that the safety information for fluoroquinolones be updated, and risk communications be published and distributed to further inform Canadians and healthcare professionals about the potential risk that some of the known side effects, specifically tendonitis/tendinopathy, peripheral neuropathy and central nervous system disorders may be persistent and/or disabling.
  • Health Canada will continue to monitor safety information involving fluoroquinolones, as it does for all health products on the Canadian market, to identify and assess potential harms. Health Canada will take appropriate and timely action if and when any new health risks are identified.

As a result of its safety review, Health Canada is working on updating fluoroquinolone warning labels.

Additionally, above and beyond what the U.S. F.D.A. has done, Health Canada has agreed to publish and distribute a Healthcare Professional Letter regarding fluoroquinolone risks. The Healthcare Professional Letter includes the following points:

  • It is recommended that the potential for disabling and persistent serious adverse events be considered when choosing to prescribe a fluoroquinolone.
  • Fluoroquinolones should not be prescribed to patients who have experienced serious adverse reactions during or after prior treatments.
  • Healthcare professionals are advised to stop systemic fluoroquinolone treatment if a patient reports a serious adverse reaction. The patient’s treatment should be switched to an alternative treatment with a non-fluoroquinolone antibacterial drug if needed to complete the treatment course.
  • Healthcare professionals should be aware that some adverse reactions associated with the use of fluoroquinolones can occur within hours to weeks after exposure to the treatment.

This acknowledgement from Health Canada that fluoroquinolones may have permanent and/or disabling effects is a huge step in the right direction for Canadian “floxies.”

All Canadians who have experienced adverse reactions to fluoroquinolones are encouraged to report their reactions to Health Canada through the Canada Vigilance Adverse Reaction Online Database.

This acknowledgement from Health Canada is a huge step in the direction of safety and informed consent for all Canadians. It is appreciated!

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Fluoroquinolones and Lead Toxicity

Several people have asked me to write a post about how fluoroquinolones may mobilize, or otherwise affect, lead in our bodies. I haven’t gotten around to doing the research that would be involved in writing a post like that, BUT, my friend and fellow “floxie” JMR did. I encourage you to read the post, “Love May Be Fleeting, but Lead Is Forever: Testing for Lead Toxicity” published on Hormones Matter.

The entire post is enlightening and informative, and I encourage you to read the whole thing. Here are some excerpts that are particularly enlightening and useful for “floxies.”

“A particularly interesting, and in my opinion, potentially significant “Lead Re-exposure” incident may have occurred when I took a fluoroquinolone antibiotic over six years ago. I experienced a severe, acute, and ultimately permanent adverse reaction to just a few pills, described in articles I previously wrote for this website, here and here.   Symptoms of “Fluoroquinolone Toxicity” appear to mimic many other conditions, and lead toxicity is one of them. I describe how these FQ antibiotics may have contributed to yet another bout of “Acute Lead Toxicity” within myself after taking these antibiotics here (Scroll down about 60% of the page to “V-ATPase:  Target for Osteoporosis /Adverse Effects”).  How do I know if that did or did not happen to me?  I don’t – because I didn’t know to test blood lead levels during the acute stage (first 6 months) of my reaction or beyond. But now that I do, I would recommend all severely affected fluoroquinolone victims monitor blood lead levels over time during the course of their reaction, especially during the acute phase and relapses, to see if this might be something occurring in this population. A nice summary in table form shows the biological fate of Lead and its clinical significance here.”

And:

“After that, it’s well accepted that overall mineral status is a factor. Lead competes with essential minerals such as calcium, iron, phosphorus, and zinc for the same receptors in enzymes, transporters, and in cell signaling processes.  Adequate concentrations of minerals can offset the small concentrations of lead found in background levels of foods and soils, and can only help if Lead exposure increases. Keeping a healthy balanced mineral status is probably one of the best defenses against lead toxicity, forcing lead excretion rather than binding to enzymes or storing in bone.  High concentrations of healthy essential minerals combined with low concentrations of lead levels is the best scenario, as essential minerals we need to function would be able to out-compete lead for enzymes, receptors, and transporters. On the other hand, low concentrations of healthy essential minerals combined with high lead levels would be a worst case scenario for potential toxicity. Children and adults eating healthy diets with adequate minerals will probably experience less toxicity to the same exposures of lead than someone who is deficient in calcium, iron, phosphorus, zinc or other minerals. Unlike when I was a young child, there is so much more knowledge and awareness about minerals and their importance today, and the internet makes this type of information easily accessible. A vast array of mineral supplements are available as well, making this an easy approach to help with prevention.  A nice lead-related summary of nutrients can be found here:  Fact Sheet: Nutrients That Reduce Lead Poisoning.”

The whole post is filled with great information, and I encourage each of you to read it. It also contains a list of links and resources that is immensely valuable to anyone interested in learning more about lead as it relates to illness.

Thank you for checking it out, and a huge THANK YOU to JMR for the post!

More information about the connections between fluoroquinolone toxicity and lead poisoning can be found on JMR’s web site, www.fluoroquinolonethyroid.com, on the post “Lead Toxicity: Secondary to Hyperthyroidism, Hyperparathyroidism . . . and Fluoroquinolone Toxicity?

This article, “Osteoporosis, lead, and baby boomers: When time gets the lead out.” is also full of excellent information.

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Fluoroquinolone Toxicity and Acetylcholine (ACh) Damage

I suspect that fluoroquinolone antibiotics deplete, inhibit, or otherwise adversely affect acetylcholine (ACh). ACh is a neurotransmitter that has the following functions:

  1. It is a neuromodulator of the central nervous system, the autonomic nervous system, and the peripheral nervous system.
    1. In the autonomic nervous system, ACh has key roles in both the sympathetic and parasympathetic nervous systems, and affects motility through the digestive tract, sweating, tear production, balance, heart-rate, breathing, etc.
    2. In the central nervous system, ACh plays a role in regulating arousal, attention, sleep, and motivation.
    3.  In the peripheral nervous system, ACh controls muscle activation (both skeletal muscles and smooth muscles–the muscles that involuntarily contract and release).
  2. It affects vascular tone.
  3. A lack of ACh is linked to Alzheimer’s Disease, Parkinson’s Disease, autism, schizophrenia, bipolar disorder, and other chronic CNS illnesses.
  4. It suppresses inflammation.
  5. It affects the release of hormones.

Fluoroquinolones damage connective tissues (tendons, ligaments, cartilage, fascia, etc.) throughout the body, as well as the nervous systems (central, peripheral, and autonomic). After getting “floxed” people often suffer from autonomic nervous system dysfunction (including dysautonomia, loss of digestive motility, problems sweating, balancing, etc.), central nervous system dysfunction (including psychosis, insomnia, changes in personality, etc.), and peripheral nervous system dysfunction (including peripheral neuropathy). Fluoroquinolone toxicity often resembles autoimmune diseases in its symptoms, and, like many people with autoimmune diseases, inflammation is often rampant in those who are floxed. Many “floxies” have reported hormonal problems, including thyroid hormone abnormalities, as well as undesirable levels of estrogen, progesterone, and testosterone.

There is significant match-up between the list of documented effects of ACh depletion/damage (summaries of ACH effects can be found HERE and HERE) and the documented effects of fluoroquinolones (the warning labels go over most of the symptoms of fluoroquinolone toxicity, but the personal stories on this site, as well as the stories on www.fqwallofpain.com, facebook, and other places on the internet better exemplify the actual effects of these drugs).

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In addition to the obvious links and overlaps noted above, the links between fluoroquinolones/fluoroquinolone toxicity and ACh damage are more thoroughly explored in the post, “Acetylcholine (ACh) – Related Damage” on www.fluoroquinolonethyroid.com. In it, JMR describes the connections between fluoroquinolones (and fluoroquinolone toxicity) and acetylcholine:

“Still, there were many reasons I felt that many of my problems could be ACh related, and here are some of them.  As I’ve already stated, I felt that many of my symptoms and acute flox reaction could be described as “cholinergic/anti-cholinergic” in nature, and/or MG (myasthenia gravis) related.   Drug label warnings specifically state the Fluoroquinolones have neuromuscular blocking activity, so pharma is giving us a big clue here.  ACh modulates a host of physiological processes in the central and peripheral nervous systems.  Centrally, ACh regulates motor function, sensory perception, cognitive processing, arousal, sleep/wake cycles, and nociception, while in the periphery it controls heart rate, gastrointestinal tract motility, and smooth muscle activity.   Non-neuronal ACh and AChE are distributed throughout the body, making ACh transmission and metabolism important for all cells in the body, not simply neurogenic cells.  Additionally, Non-neuronal ACh and AChE are found in tendons, and increased expression of both occurs in pathological tendinosis, and is thought to contribute to tendon pathology. (Forsgren/Danielson lab studying role of non-neuronal ACh in chronic tendinosis and tendon pathology  – search “non-neuronal ACh Tendons”).  In relationship to the thyroid, cholinergic interaction with the thyoid gland is extensive, and common epitopes may exist relating thyroid autoimmunity and ACh/muscarinic receptor autoimmunity.  ACh appears to be necessary for iodine organification (so this might be one underlying mechanism of action to explore for Hashi’s).  MuSK form of MG (myasthenia gravis) may be a separate condition from MG and there is a known association between “MuSK MG” and Graves disease.  Magnesium prevents or controls convulsions by blocking neuromuscular transmission and decreasing the release of acetylcholine at the nicotinic ACh motor nerve terminals (the analgesic properties of Mg are due to NMDA receptor blocking action). In (my) Year 5 post, as my symptoms progressed, it became apparent that Magnesium was actually exacerbating my muscle weakness, presumably by blocking neuromuscular transmission, and magnesium is something that is known to exacerbate MG symptoms (so for any flox victims for whom magnesium makes your symptoms worse, especially muscle weakness, this is something to consider).   ACh is an underlying common denominator anytime we eat; distention in the stomach or innervation by the vagus nerve activates the Enteric Nervous System, in turn leading to the release of ACh.  Once present, ACh activates G cells (produces gastrin) and parietal cells necessary for digestion.   From an FQ-Induced collagen/connective tissue damage point of view, appropriate collagen formation is also very necessary for AChE function and ACh transmission, and lack of it can result in Myasthenia Gravis like symptoms, as these COL Q studies confirm: 1, 2, 3, 4,  (and suppression of collagen prolylhydroxylation as in this FQ study here can affect COL Q; also scroll to “collagenous domains as substrates”, AChE, in this “Prolyl 4-hydroxylase” paper here).    Because of the necessary symbiotic relationship of mitochondria with their host cells (as I described here), anything that affects the host cell will often affect mitochondria as well, and this most certainly will include ACh-related problems.   However, never to be left out of an opportunity for direct damage, it turns out mitochondria also express a number of nicotinic acetylcholine receptors too (1,2).  I won’t be surprised if muscarinic receptors will also be found in mitochondria some day as well.”

I highly recommend reading the entire post to understand the arguments as to why and how fluoroquinolones may be connected to ACh disorders.

Can fluoroquinolones trigger anti-ACh antibodies? Can fluoroquinolones trigger a form of myasthenia gravis? How are autoimmune diseases connected to ACh depletion? We know that inflammation is a feature of autoimmune diseases, and that ACh modulates inflammation. We also know that lack of vagal nerve tone is related to both inflammation and autoimmune diseases, and that ACh is produced by a healthy and toned vagal nerve. We know that many of the symptoms of fluoroquinolone toxicity resemble symptoms of various autoimmune diseases, including rheumatoid arthritis, Sjogren’s Syndrome, Lupus, M.S., etc. How are autoimmune diseases, vagal nerve tone, ACh production and/or depletion, and fluoroquinolones related?

I’m not sure of the answers to those questions (I’m not sure that anyone knows the correct answers to them), but I do think that both vagal nerve tone and ACh production and/or depletion is related to fluoroquinolone toxicity (more on that assertion can be found in this post – https://floxiehope.com/2015/06/13/hacking-fluoroquinolone-toxicity-via-the-nervous-system/).

How can floxies increase their ACh? One way to increase ACh is to eat foods that are rich in choline, a precursor to acetylcholine. Choline-rich foods include:

  • Eggs
  • Chicken
  • Fish
  • Liver
  • Nuts

Some herbs and supplements that can increase ACh are listed HERE and HERE. Interestingly, caffeine, which many floxies respond negatively to, is on the list of things that increase ACh, and the supplements noted that decrease ACh have reportedly helped some floxies. As with everything, caution is warranted, and it’s best to consult with a trusted medical professional before starting any supplement protocol.

Exercises and practices that stimulate the vagus nerve can also stimulate the production and movement of ACh. Some things that stimulate the vagus nerve include:

  • Meditation
  • Breathing deeply and slowly
  • Singing
  • Playing a wind instrument
  • Submerging your face in cold water
  • Gargling
  • Chanting “OM”
  • Laughter
  • Exercise
  • Massage
  • Acupuncture
  • Chiropractic adjustments
  • Positive social interactions

More information about the benefits of stimulating the vagus nerve can be found HERE and HERE.

Many of the vagal nerve stimulating exercises and practices listed above helped me in my recovery from fluoroquinolone toxicity. Meditation and mindfulness were key elements to my recovery. Acupuncture, massage, breathing exercises, and support from loved ones (positive social interaction), were key as well. Even though none of these exercises are “quick fixes” or “big guns,” they are healing practices, and the ACh and vagus nerve connection may be how they help to repair the body and mind.

I hope that some research is done into the connections between fluoroquinolones/fluoroquinolone toxicity and ACh. It’s reasonable to think that there are connections–they just need to be proven.

Until then…. meditate, breathe, laugh, and eat liver. They really do help.

 

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First Do No Harm – By Barbara Arnold

The following was written by Barbara Arnold and published in a magazine aimed toward ex-pats living in Spain. When Barbara sent it to me she said, “If it saves one person from taking this poison, then I will be happy. I am trying to get it translated to Spanish so I can send it to the Spanish papers here.
I urge every floxie that is well enough to try and get articles published in any magazine local paper etc. It’s certainly helped me focus my anger in a positive way, and maybe eventually it will become better known about.”

I also encourage all of my floxie friends to write something like what Barbara wrote below. It is important to focus your anger in a positive way, and it is even healing. Writing, advocating, and helping others through this mess have been vital parts of my healing process. I suspect that those things can be healing for other people as well, and I encourage each of my floxie friends to write, advocate, and help others in whatever way you feel comfortable. 

Thank you, Barbara, for speaking out and passionately advocating for those in medicine to think about the Hippocratic Oath when they prescribe fluoroquinolones!

FIRST DO NO HARMWritten by Barbara Arnold.

Before Doctor can practice they have to take “The Hippocratic oath”, First do no harm. Unfortunately harm is being done to hundreds of thousands, maybe even millions of people across the world by Doctors prescribing antibiotics from a group called FLUOROQUINOLONES.

For me, it all started nearly 2 years ago when I went to the Doctor with bronchitis. I had no idea then that my life was about to change, in the most awful drastic way possible and that for the next two years to date I would still be  suffering from the debilitating side effects from ciprofloxacin an antibiotic from the group called FLUOROQUINOLONES. At the same time I was given cortisone injections the result of which was like a bomb going off in my body. It started with searing pain in my Achilles tendons, at the time I stupidly believed that it was caused by changing my high heeled shoes to low heels and then walking to far. I had no idea that my body was being POISONED by a treatment for a simple thing like Bronchitis. I had great difficulty walking but I believed it would soon get better. HOW WRONG I WAS. 

I had mentioned to the nurse who was administrating the cortisone injection that I was having trouble walking, and did he think it was anything to do with the injections. He told me it couldn’t be as cortisone is an anti-inflammatory. At this point I did not connect the dots. I later found out these drugs are contra indicated to anyone over 60yrs and even worse especially alongside cortisone injections. Fluoroquinolones leach magnesium from the cells and as you get older you have less magnesium to begin with. The pain got worse to the point I ruptured a tendon causing a bruise the size of “England” on the inside of my right leg and I could   barely walk a few yards. At the same time I started to get Chronoc Fatigue to the point where I could hardly keep my eyes open. I had dizziness and balance problems.

For the next three months and many visits to my Doctor, I eventually saw a Rheumatologist who diagnosed my condition as “side effects of ciprofloxacin”.

From that point onwards I started to do my own research on Fluoroquinolones. The results were MIND BLOWING I found out that these antibiotics were being used for simple bladder infections, bronchitis and sinus infections. This was the equivalent of using a sledge hammer to kill a fly. There are many other safer antibiotics that could be used without the devastating side effects that can be caused by Fluoroqinolones. I was told I was a RARE CASE and that my Doctor had never heard of this before. Unfortunately this is totally untrue, as the symptoms of fluoroquine poisoning are vast and in some people the reaction does not occur until months later. Therefore a lot of misdiagnosis is going on. Here are some of the symptoms that can occur but are not limited to, weeks or even months later.

MUSCULOSKELETAL DAMAGE WITH DEGENERATION OF CARTILAGE AND TENDONS. DAMAGE TO THE MITOCHONDRIA (the power cells that give us energy} DETATCHED RETINAS, NEURO PROBLEMS, ANXIETY, PANIC ATTACKS. PERIPHERAL NEUROPATHY IE, BURNING, DAMAGED NERVES,, PAIN, OXIDATIVE DAMAGE IN MAMMALIAN CELLS, CELL DEATH, INSOMNIA, DIFFICULTY BREATHING, PALPITATIONS, SKIN RASH, VOMITING, HIVES LOSS OF MUSCLE STRENGTH, BRAIN FOG. These are just a few of fluoroquinolone poisoning symptoms. There are many many more.

As things got worse I had to result to using  a wheelchair as it was extremely painful to walk. As well as the pain, my legs felt like I was dragging along lead weights. During the months that followed I had various blood tests which showed NOTHING apart from high ferritin levels. I was referred to another Rheumatologist who treated me more or less with contempt as no test she did showed anything wrong. I had  learned that there was a BLACK BOX WARNING in America about this group of antibiotics and when I told her about this, that the Black Box Warning is the highest warning you can get in America, she scoffed at me and declared “This is Spain not America.”  This kind of arrogance and ignorance is allowing others to suffer in the most devastating ways. Subsequently, some 18 months later, the Food and Drug Administration has just issued an advisory to ALL DOCTORS IN THE UNITED STATES, to cease using these dangerous drugs to all patients unless it is a life or death situation.

I have spent thousands of pounds in natural supplements trying to cure myself as Doctors do not have any answers. However there are some Doctors willing to listen now as they or some-one in their family have been effected. by this group of chemotherapy drugs. YES they are chemo drugs because they destroy good cells as well as bad. They do damage down to the very DNA and in some people they leave permanent nerve damage. I am presently seeing an integrative Doctor who is also a Medical Doctor. He is in Marbella and I have to travel 5 hours to see him. I have no choice if I want to recover. The medical health care system here poisoned me and now I have to heal myself with all the costs that, that incurs.

I fully understand that Doctors do the best they can and cannot be expected to know the side effects of every drug they prescribe, but this group of drugs are completely different as they are one of the most dangerous drugs on the market, It was the responsibility of the  health representatives to inform Doctors of this. They were negligent in their duty of care and because of that I, and many other’s have been sentenced to years of suffering. This has been known about since the 1970’s. The attitude of the pharmaceutical companies beggars belief. It is only now with the event of the world-wide web that this is becoming common knowledge   If you think you have been effected by any of these drugs go to http://www.floxiehope.com. There is a mine of information there from fellow sufferers and Doctors who are now beginning to take notice. I urge every-one that reads this to be very very careful that you are not prescribed any antibiotic from this group namely ….CIPROFLOXACIN, LEVAQUIN/LEVOFLOXACIN, AVELOX/MOXIFLOXACIN OR FLOXIN/OFLOXACIN.

To conclude, not everyone that takes these drugs suffers the side effects initially but eventually maybe years later this has been known to happen. There are likely genetic factors that make some people  more susceptible to suffer adverse reactions to fluoroquinolones than others. Human bodies are complex and how a drug reacts in a human body is difficult to predict. I just wish Doctors took their  “Hippocratic Oath” more seriously and FIRST DO NO HARM.

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Hyperparathyroidism

Several floxies have reported that they have been diagnosed with hyperparathyroidism.

Though I think that fluoroquinolones can cause hyperparathyroidism, I am not going to go into that right now – I hope to explore the connections in future posts.

For right now, I want to encourage all floxies to get tested for hyperparathyroidism.

The parathyroid gland controls the amount of calcium in the body. Calcium homeostasis (which helps set the stage for magnesium homeostasis as well) is so important, it has its own entire little endocrine system to control it – the parathyroid glands.

Hyperparathyroidism is caused by a non-cancerous tumor on one (or more) of the four parathyroid glands. This tumor causes the parathyroid glad to release too much parathyroid hormone (PTH), which causes high blood calcium. Though parathyroid tumors are not cancerous, they are dangerous because high blood calcium can cause “osteoporosis, chronic fatigue, kidney stones, stroke, high blood pressure and increased cancer risks (a partial list).” Additionally, hyperparathyroidism is linked to tendon ruptures and many of the other symptoms of fluoroquinolone toxicity.

In a recent article in The Atlantic, “Garry Shandling and the Disease You Didn’t Know About: The comedian suffered from hyperparathyroidism, a rare and under-publicized condition that can sometimes be fatal, James Fallows notes that his doctor stated:

“a parathyroid disorder was about as damaging as smoking a pack of cigarettes per day. It weakened the bones; it raised the risk of heart attacks and some cancers, and kidney stones too; it caused mood disorders; and—I’ll confess the most alarming—it led to memory lapses, attention failures, and dementia. The bone-weakening is because the hyperactive gland continually draws calcium out of the bones and into the blood serum. Most of the other problems are because of disturbances in calcium’s role as a neurotransmitter. My wife later told me that she thought I was getting dumber by the day in the year before the operation.”

The initial tests for hyperparathyroidism involve testing levels of calcium and PTH in the blood. Getting your calcium and PTH levels tested is relatively easy, non-invasive, and inexpensive. Your doctor should be able to test your levels of both calcium and PTH (note that calcium and PTH should be tested simultaneously). High, or even high-normal levels of calcium and PTH are red flags, and test results should be paid very close attention to.

It should be noted that PTH has a very short half-life (about five minutes), and that multiple tests may need to be run in order to get an accurate reading on your calcium/PTH levels. If both calcium and PTH are way out of range, you have your diagnosis of hyperparathyroidism. If both calcium and PTH are high normal – you test again – and maybe a third time – to see if this is consistent, getting worse, or if you just happened to “catch a high” one time.  If you are getting consistently higher results on both – that’s a problem.

Unfortunately, I’ve also heard from some floxie friends whose doctors weren’t concerned about very high calcium levels. Please be aware that excess calcium is a VERY big deal – it’s not bonus good calcium making your bones stronger – it’s calcium being stolen from your bones that is now circulating through your body. If your calcium tests come back high, or even high-normal, I encourage you to chat with your doctor about the possibility of you suffering from hyperparathyroidism. If your doctor isn’t concerned about this possibility, I suggest finding another doctor.

This video is an excellent overview of hyperparathyroidism:

The solution for hyperparathyroidism is surgical removal of the parathyroid gland that has the tumor (the tumor is called an adenoma). Luckily, we don’t need all four of our parathyroid glands to live a healthy and full life – people do just fine with as few as one parathyroid gland. I certainly don’t take surgery lightly, but it is a solid solution to the problem of hyperparathyroidism.

A lot of good information about hyperparathyroidism can be found on http://www.parathyroid.com/.

 

 

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Antibiotic Brain Fog – Some Possible Solutions

I experienced memory loss, disconnectedness, loss of reading comprehension, and slow-thinking while I was going through fluoroquinolone toxicity. Losing my ability to think, and feeling as if I had lost my ability to do my job (I held onto my job and my employer was kind and patient through the whole ordeal), were truly terrifying. I felt stupid. I was scared that I was stupid, or worse–that I had some sort of permanent brain damage.

Thankfully, those symptoms subsided, and my mind has recovered along with the rest of me. I describe the things I did to heal my brain after fluoroquinolone toxicity in the post, “Healing my Brain After Cipro.” The things that helped my brain to heal are:

  1. Time
  2. Meditation
  3. Sudoku Puzzles
  4. Reading
  5. Writing
  6. Researching

All of those things truly did help me. Each one is a process, not a quick-fix. Being patient and letting the healing hands of time do their magic helped my brain to heal. Meditating every day for a minimum of 20 minutes helped to calm my mind, increase my confidence, give me patience, increase my concentration, and enable me to feel more connected to the world and the people in it. Sudoku puzzles, reading, writing, and researching all helped in that using my brain seemed to make it stronger and more capable.

I wholeheartedly recommend each of those things to everyone who is struggling with brain-fog. They’re helpful, empowering, and they can’t hurt.

I want people to realize that their brains can heal without doing anything drastic, and that with time and use, your floxed mind can heal along with the rest of you.

However, many people look at that list and say, “Those things aren’t going to work for my SEVERE brain fog. I need something more drastic than sudoku puzzles.” Fair enough.

I am risk-averse and, frankly, I’m not a very good biohacker because I’m risk-averse. Therefore, I tend toward gentle, non-invasive, healing methods.

Many of you are willing to take more risks than I am though, and for you, I think that the advice of Dave Asprey (“the world’s most famous biohacker” according to Men’s Fitness Magazine) in his post, “13 Nootropics to Unlock Your True Brain” may be helpful. I highly recommend that each of you read the article because Dave has a lot of excellent insight in it. I’m going to go over some of his recommendations and how they relate to “floxies” in this post.

Dave’s nootropic recommendations:

  1. Modafinil (Provigil), armodafinil (Nuvigil), and adrafinil. I have heard of anyone suffering from antibiotic brain-fog trying these nootropics. If you have something to report about them, please let me know and I’ll add it to this post.
  2. Racetams. Look at the comments on the bottom of the post, “The Mitochondrial Link – Fearless Parent Podcast #81.” The person commenting as “Your Future” gives a lot of interesting information about racetams and mitochondria.
  3. Nicotine. Yes, seriously, nicotine. More information about nicotine can be found HERE. For floxies, it should be noted that fluoroquinolones inhibit CYP1A2 enzymes. Nicotine induces CYP1A2 enzymes. There are significantly safer ways to try nicotine than through smoking or chewing tobacco products and some of those options can be found in “Is Nicotine the Next Big Smart Drug?” It should also be noted that broccoli also induces CYP1A2 enzymes, and it has none of the drawbacks that nicotine has. However, this post is about things that can perk-up your brain, and nicotine can do that while broccoli, unfortunately, can’t.
  4. Amphetamine (Adderall). A floxie friend told me that Adderall helped him immensely. Be careful. Adderall, of course, is not without consequences. Here is the warning label for Adderall – http://www.accessdata.fda.gov/drugsatfda_docs/label/2007/021303s015lbl.pdf. Here are patient reviews of Adderall – http://www.askapatient.com/viewrating.asp?drug=11522&name=ADDERALL+10. I wouldn’t take it, but that’s just my extremely biased opinion.
  5. L-theanine. From Ruth’s recovery story on Floxie Hope, “L-Theanine helps my brain to be a less noisy place—it ‘cuts the chatter’ as Dr. Whitcomb says.” More information about Ruth’s experience with L-theanine can be found in the comments on her story.
  6. Bacopa monnieri. Here are some Floxie Hope comments that note how people dealing with FQ toxicity responded to bacopa monnieri. https://floxiehope.com/comment-page-30/#comment-27587https://floxiehope.com/comment-page-46/#comment-37325https://floxiehope.com/ruths-story-cipro-toxicity/comment-page-6/#comment-35332.
  7. LSD. I haven’t heard from anyone who has tried LSD post-flox. If anyone has anything that they’d like to share with me and/or the Floxie Hope audience, please contact me. I find the stories of healings that occur post hallucinogenic drug use to be interesting. As I said though, I’m risk-averse and not eager to try things like LSD.
  8. Unfair Advantage. Unfair Advantage is a Bulletproof product that contains Bio-identical ActivePQQ™ and CoQ10. It enhances mitochondrial function. There is evidence that fluoroquinolones damage mitochondria, and mitochondrial support supplements such as Unfair Advantage may help floxies in multiple ways. I tried Unfair Advantage just before I was on Bulletproof Radio discussing fluoroquinolone toxicity. I was fully healed at the time that I tried it, so my experience may not be as dramatic as the experience of someone who is recently floxed, but I did find that it improved my energy level and concentration.
  9. Bulletproof Upgraded Aging Formula. I don’t know of any floxies who have tried the Bulletproof Upgraded Aging Formula. If you have an experience with it, please contact me.
  10. Forskolin & artichoke extract. I haven’t heard from anyone who has tried Forskolin & artichoke extract. Please contact me if you have an experience with it. As with all of the things mentioned in this section of this post, more information about them can be found on 13 Nootropics to Unlock Your True Brain. “Forskolin” is a very fun word though. Say it ’til you giggle, ’cause laughter really is good medicine. :p

Please do plenty of independent research before you try any of these. They all have their pros and cons and informed consent really is important.

Things like a healthy diet, getting enough sleep, minimizing anxiety, and healing the gut can also be helpful for getting through fluoroquinolone-induced brain-fog. Those things have no negative side-effects, so concentrating on them is highly recommended.

I hope that the things mentioned in this post help you to get your mental capacity back! Please be patient and kind to yourself as you go through the healing process. Healing takes time, and it may take trying a variety of different things before you find things that heal your mind and body. Patience and kindness toward yourself as you go through the healing process certainly can’t hurt, and they will probably even help.

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Organofluorine Accumulation

I highly recommend that everyone read these two articles:

  1. The New York Times Magazine, “The Lawyer Who Became DuPont’s Worst Nightmare
  2. The Huffington Post, “Welcome to Beautiful Parkersburg, West Virginia: Home to one of the most brazen, deadly corporate gambits in U.S. history

They’re both brilliant exposés about DuPont’s dumping of perfluorooctanoic acid (PFOA) into the groundwater and land of Parkersburg, West Virginia. They reveal corporate malfeasance, regulator ineptitude, health risks, and environmental degradation that everyone should be aware of.

I also wrote an article that was published in Collective Evolution on the topic of organofluorine compounds like PFOA and how they affect our health – “Fluorine-Based Toxins Accumulate In The Body & Cause Multiple Health Problems.” You should read (and share) it too. 🙂

The articles listed above aren’t directly about fluoroquinolones. However, I suspect that they are connected to fluoroquinolones, and fluoroquinolone toxicity.

Both the chemical noted in the articles, perfluorooctanoic acid (PFOA, aka C8), and fluoroquinolones, are organofluorine compounds–meaning that they are composed of a carbon-fluorine bond. That fact alone does not mean that fluoroquinolones have the same consequences as perfluorooctanoic acid, but it does mean that similarities should be examined.

Organofluorine Bioaccumulation

The most worrisome aspect of perfluorinated compounds (PFCs) – man-made types of organofluorine compounds, like PFOA, that are used in many non-stick consumer products including cookwear and carpeting – is that they, essentially, never biodegrade. They stay in our bodies, and the environment, indefinitely, because there are no mechanisms in our bodies (or in the environment) to break them down.

Per the article, “Human detoxification of perfluorinated compounds:”

“it appears that most PFCs may be re-absorbed and returned to the liver through the enterohepatic circulation where the cycle of biliary excretion and re-absorption recommences repeatedly. In addition, there is increasing evidence in the literature that persistence in the body may also result from impaired renal excretion of some PFCs due to renal tubular re-absorption mediated through organic anion transporters.”

Additionally, PFCs accumulate in the environment and work their way up the food chain. They get absorbed into plants, then absorbed by the animals that eat the plants, then absorbed by the animals that eat those animals, until they are highly concentrated in the animals at the top of the food chain (us).

Do fluoroquinolones, or fluoroquinolone metabolites (specifically organofluorine metabolites), also stay in the body indefinitely–getting recycled and re-absorbed through enterohepatic circulation? Do they bioaccumulate indefinitely like PFCs?

Tolerance Thresholds for Fluoroquinolones

If fluoroquinolones (or their metabolites) bioaccumulate, it would make sense of some aspects of fluoroquinolone toxicity.

First, there appears to be a tolerance threshold for fluoroquinolones. People can tolerate fluoroquinolones well until they reach their personal tolerance threshold, at which time they get “floxed.” Some people are devastated by a single prescription of fluoroquinolones, while other people can tolerate several prescriptions before they get obliterated by fluoroquinolone toxicity. Personally, I was fine after my first exposure to ciprofloxacin in 2010–it was only after my second exposure in 2011 that I had an adverse reaction. (Of course, it should be noted that some people never reach their tolerance threshold and never experience getting “floxed.”)

Likewise, there appears to be a tolerance threshold for PFC exposure. People don’t get cancer, or colitis, or have children with birth-defects, after a single time cooking with a Teflon pan. Exposure to PFCs at high doses is necessary for their ill effects to become apparent. However, because of bioaccumulation, repeated small exposures (say, a decade of cooking in non-stick pans while living in a house with PFC-coated carpets) can lead to levels of PFCs in one’s body that are high, and can lead to negative health outcomes. That’s what makes the bioaccumulation situation so frightening–we all have PFCs in our blood* and every time we’re exposed to more, the toxic burden on our body increases.

Could our tolerance threshold for fluoroquinolones not only be a tolerance threshold for FQs, but also our tolerance threshold for all sources of organofluorine compounds (fluorinated pharmaceuticals, non-stick consumer goods, pesticides, etc.)?

Could the people who get “floxed” be the people with already high levels of PFCs who get pushed over the toxic edge by fluoroquinolones? Or, are the people who have adverse reactions to fluoroquinolones those who are particularly bad at metabolizing and eliminating organofluorine compounds / really good at holding onto and recirculating those toxins? Certainly, there must be some factors that differentiate those who suffer from adverse reactions to fluoroquinolones from those who don’t. There are any number of potential environmental and genetic factors, and maybe bioaccumulation of organofluorine compounds is a factor that should be considered (levels of PFCs and bioaccumulation may be due to a combination of both environmental and genetic factors).

The notion of a tolerance threshold for fluoroquinolones is reinforced by the cross-reactivity between fluoroquinolones. Once a person has an adverse reaction to a fluoroquinolone, all fluoroquinolones (not only the one they reacted badly to) are contraindicated for that person. This cross-reactivity may, or may not, have to do with an accumulation of organofluorine compounds or their metabolites (please keep in mind that there are other mechanisms for the cross-reactivity phenomenon).

Though bioaccumulation of toxins (including, but not limited to organofluorine compounds like fluoroquinolones and PFCs) is a problem that needs examination, I don’t think that the situation is hopeless for those who carry a high burden of toxins. Lifestyle changes may be necessary to avoid toxins and pollutants, and our natural cleansing organs may need to be supported a bit (through diet, supplements, etc.), but there is plenty of evidence that healing from fluoroquinolone toxicity is possible, and despite all the pollution in Parkersburg, WV, there are still some healthy people there. Bioaccumulation of toxins is frightening, for sure, but though our bodies are not well equipped to deal with organofluorine compounds, we do have detoxification and healing mechanisms that are helpful.

Years of Poisoning and Pollution

DuPont first started using PFOA in 1951. Internal documents reveal that they knew that PFOA was toxic at that time, yet they still used it in consumer products and disposed of it improperly. It wasn’t until 2011 that independent scientists, “began to release their findings: there was a ‘probable link’ between PFOA and kidney cancer, testicular cancer, thyroid disease, high cholesterol, pre-eclampsia and ulcerative colitis.” It wasn’t until 2016 that major news organizations like The New York Times and The Huffington Post began to publish articles about PFOA. Additionally, if you read “The Lawyer Who Became DuPont’s Worst Nightmare” you will note just how many things fell into place for the news of the toxicity of PFOA to reach the public.

How long will it take for fluoroquinolone-injury lawsuits to prevail, for studies examining whether or not fluoroquinolone-use is connected to the many diseases of modernity, and for major investigative journalism pieces to be completed? How long will it take for fluoroquinolone toxicity to reach public consciousness and for systems to change? As far as I know, no one is even looking at whether or not toxic fluorine metabolites are formed by fluoroquinolones, or whether or not they bioaccumulate like PFCs. Though there are hundreds of articles about the harm that fluoroquinolones do to cells (especially to mitochondria – BTW organofluorine metabolites like fluoroacetate and fluorocitrate wreak havoc on mitochondria. Unfluorinated quinolones may too though, so keep that in mind.), the only researcher who I know of who is even making steps toward connecting fluoroquinolone-use to the chronic, multi-symptom diseases of modernity is Dr. Golomb with The Fluoroquinolone Effects Study. I hope that more researchers study the many aspects of fluoroquinolone toxicity (mitochondria damage, mineral depletion, neurotransmitter dis-regulation, microbiome damage, thyroid damage, endocrine disruption, organofluorine metabolite accumulation, etc.) and that the questions raised in this post, and throughout this site, are answered.

Maybe we truly are canaries in the coalmine–warning everyone about the dangers, not only of fluoroquinolones, but of all fluorinated drugs, and also for the accumulated organofluorine compounds in our environment. It’s certainly a hypothesis that should be looked at. I would hate for 65 years of organofluorine compound metabolite accumulation to occur because of fluorinated drug use before an examination even takes place. After all, the toxicity of other organofluorine compounds is well-documented, so I’m not sure why fluorinated drugs are assumed to be safe. Fluoroquinolones certainly aren’t safe, and they need to be researched much more thoroughly.

Conclusions

I have neither the resources nor the expertise to know whether or not adverse reactions to fluorinated drugs, like fluoroquinolones, are related to the buildup of PFCs in our bodies and our environment. There are some aspects of fluoroquinolone toxicity that make more sense when it is noted that bioaccumulation is possible. Given that fluoroquinolones have a fluorine-carbon bond, and that other organofluorine compounds have been shown to bioaccumulate and wreak havoc on health, I think it’s something that should be explored.

Regardless of whether or not fluoroquinolones contribute to organofluorine load, we should all be concerned about PFCs in our bodies and our environment. Bioaccumulation of PFCs is going to make the problem worse and worse as time goes on. As chemical producing corporations like DuPont blatantly lie as they shift from one organofluorine pollutant to another, claiming that the current one is safer than the proven-toxic past ones–even though it’s not, more and more PFCs will accumulate. The potential detrimental effects of accumulated PFCs to our personal and collective health are yet to be determined. I suspect that health outcomes for humans, and all the other animals on the planet that are exposed to these compounds, will get worse and worse as time goes on and as they bioaccumulate. Perhaps I’m a pessimist though, and the consequences of organofluorine compounds in our environment won’t be as dire as I fear. We, or our children or grandchildren, shall see. Surely, future people will look back at this time and think that we are all fools for letting unregulated, greedy, corporate giants like DuPont release permanent, harmful pollutants into the world simply so they could make millions on non-stick pans and stain-resistant carpets. What a sad, sad, state of the world.

 

* “C8 was being detected everywhere—produce and beef in American grocery stores, polar bears in the Arctic, children in the remote Faeroe Islands. One analysis of blood banks from around the world showed that nearly all of the blood contained C8. The lone exception was a set of archived samples that had been collected from Korean War veterans before 1952.” (Source)

 

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Dear Epidemiologists – Please Take a Look at Fluoroquinolones

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This paragraph, in a 2013 New Yorker article entitled The Big Sleep, caught my attention:

“In a recent paper in the online edition of the British Medical Journal, Daniel Kripke, a professor emeritus at the University of California San Diego School of Medicine, examined five years of electronic medical records collected by a health system in Pennsylvania. He compared more than ten thousand patients who had been prescribed a sleep medicine—most commonly Ambien—and more than twenty thousand patients who had not. After adjusting for age, gender, smoking habits, obesity, ethnicity, alcohol use, and a history of cancer, and after controlling, as much as possible, for other diseases and disorders, Kripke found that people who had taken sleeping pills were more than three times as likely to have died during the study period as those who had not. Those on higher doses of the drugs were more than five times as likely to have died.”

The drug featured in the article was a new sleeping pill called Suvorexant, and the quote is about Ambien, but it made me wonder–Can someone PLEASE do a similar epidemiological study for fluoroquinolones? I want to know how health outcomes are for those who take fluoroquinolones versus those who take other antibiotics.

The symptoms of fluoroquinolone toxicity are similar to the symptoms of autoimmune diseases like R.A., M.S., Lupus, scleroderma, and other autoimmune conditions–and several people have been diagnosed with those diseases after experiencing fluoroquinolone toxicity. Fluoroquinolone toxicity symptoms are also similar to those of fibromyalgia, M.E./C.F.S., P.O.T.S., and other “mysterious” diseases of modernity. Fluoroquinolone toxicity, like those diseases, features peripheral neuropathy and central nervous system disturbances (like brain-fog, intractable insomnia, etc.). Psychiatric disturbances have been commonly reported among those suffering from fluoroquinolone toxicity. Severe musculoskeletal problems among those taking fluoroquinolones have been reported (and actually studied). Frighteningly, some who have experienced fluoroquinolone toxicity have experienced symptoms of neurodegenerative diseases like A.L.S. and Parkinson’s.

The warning labels for fluoroquinolones are 43 pages long, and list many of the symptoms of fluoroquinolone toxicity. In the November 5, 2015 FDA meeting regarding fluoroquinolones, it was acknowledged that symptoms of fluoroquinolone toxicity are severe and that they resemble the symptoms of many diseases. Fluoroquinolones have also been noted as a source of permanent disability, and delayed adverse effects have been experience and documented. The FDA panel at the November 5th meeting noted that further studies of fluoroquinolones are needed.

YES, further studies are needed.

We need long-term studies that determine whether or not people who are given fluoroquinolones are more likely to be diagnosed with an autoimmune, neurodegenerative, psychiatric, or “mysterious” disease than those who don’t take fluoroquinolones.

I hope that someone takes a closer look at fluoroquinolones to see what the long-term health consequences of them are. Patients and physicians alike should know whether or not there are long-term consequences to taking a prescription drug–so they can adjust their actions accordingly.

Additional musings on this topic can be found in the December 14, 2015 post on Hormones Matter, “Dear Epidemiologists, Consider Fluoroquinolones.”

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FDA Hearing – Victory for Victims of Fluoroquinolones

FDA Hearing Fluoroquinolones

On November 5, 2015, a meeting was held at the FDA’s White Oak campus in Silver Spring, Maryland, for the Antimicrobial Drugs Advisory Committee to discuss, “the risks and benefits of the systemic fluoroquinolone antibacterial drugs for the treatment of acute bacterial sinusitis, acute bacterial exacerbation of chronic bronchitis in patients who have chronic obstructive pulmonary disease, and uncomplicated urinary tract infections in the context of available safety information and the treatment effect of antibacterial drugs in these clinical conditions.”

Hundreds of victims of fluoroquinolones from all over the U.S. and Canada came to the meeting to tell their stories of fluoroquinolone toxicity, and the pain and disability that fluoroquinolones brought to their lives. 35 victims and advocates had the opportunity to speak directly to the committee.

The stories of pain, disability, and death caused by Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin were heart-felt and poignant. The pain that these drugs have caused was noted by all those in attendance–including fellow victims, supporters of victims, the media, and the committee.

After deliberation and discussion, the FDA committee decided that the risk and benefits of systemic fluoroquinolone use for treatment of sinus infections, bronchitis in those with COPD, and uncomplicated urinary tract infections, are NOT sufficiently described in the warning labels for fluoroquinolones. The committee voted almost unanimously in favor of changing the warning labels. WE WERE HEARD! This is a HUGE step in the right direction!

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The committee is now going to recommend that the FDA update the warning labels to better address the risks and benefits associated with fluoroquinolones. You can read in past posts about how the briefing for this meeting acknowledged that fluoroquinolones are no better at treating the conditions in question than placebos (https://floxiehope.com/2015/10/20/the-fda-notes-that-fluoroquinolones-are-no-better-than-placebos/) and how fluoroquinolones cause a constellation of disabling symptoms (https://floxiehope.com/2015/10/25/an-official-name-fluoroquinolone-associated-disability-fqad/). The entire brief can be read HERE.

An almost unanimous vote by the committee is a HUGE step in the right direction and it is a huge VICTORY that should be celebrated!

THANK YOU to all who came to the meeting testify or to support! You are all appreciated!

In a few days (maybe weeks) the entire meeting will be available to be viewed online. I suggest checking in at the FDA’s web site in a couple of weeks – http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/Anti-InfectiveDrugsAdvisoryCommittee/ucm424449.htm. (I’m not sure that that’s the correct link. If it’s not, I apologize.)

Here are a couple of videos of the testimony provided:

Nicole Delaine:

Michael Kaferly:

More information about Michael’s journey to tell his story can be found at – http://thencamemichael.com/2015/11/08/david-vs-golliath-michaels-fda-testimony/

Here is what I (Lisa Bloomquist) said:

My name is Lisa Bloomquist. I flew in from Denver in order to testify about the damage that ciprofloxacin did to me, and to encourage you to cut the approved uses for fluoroquinolones so that they are only used in life-or-death situations.

In 2011 I took ciprofloxacin to treat an uncomplicated urinary tract infection. I experienced the following symptoms after taking it:

1. Hives all over my body
2. Weakness in my legs to the point that I could barely walk
3. Tightness and pain in my tendons
4. Brain fog
5. Memory loss
6. Autonomic nervous system dysfunction
7. Fatigue
8. Anxiety, fear and other central nervous system symptoms

I was sick for 18 months of my life in my early 30s because of a drug I took to treat a simple urinary tract infection. I have gotten rid of subsequent uncomplicated UTIs with d-mannose and my immune system. It is NOT APPROPRIATE for drugs that are as dangerous and consequential as ciprofloxacin and the other fluoroquinolones to be prescribed to treat simple infections that can be cured with more benign methods.

You will hear the testimony of people who have had much worse reactions than I did. You will hear from people whose lives have been destroyed by fluoroquinolones. The adverse effects of these drugs are severe.

Janssen and Bayer lawyers claim that there is no mechanism for the constellation of symptoms described today. They are wrong.

Fluoroquinolones cause:

  1. Mitochondrial damage which starts a vicious cycle of oxidative stress and further mitochondrial damage. 
  2. Acute fluoride toxicity.
  3. Fluoroquinolones chelate vital minerals from cells, including magnesium and iron. These minerals are necessary for hundreds of enzymatic reactions. 
  4. Fluoroquinolones cause a downgrading of GABA receptors and essentially throw people into protracted benzodiazepine withdrawal.
  5. Fluoroquinolones cause a massive histamine release and mast cell activation. 
  6. They cause collagen synthesis disorders.
  7. They cause microbiome destruction.
  8. All topoisomerase interrupting drugs cause epigenetic damage. They are chemo drugs. Fluoroquinolones should be treated as chemo drugs. They should only be used in life-or-death situations. 

I know these effects, and I can refer you to the studies documenting them. Why don’t you?

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Sherry Reiver:

Good afternoon chair and committee people,

I am so angry after hearing the drug companies but I have my speech written already!

My name is Sherry Reiver and I am 64 years old. I have been sick from FQs in all forms since I was 43. I moved from NY to Charlotte 10 years ago and for 21 years it is difficult to find a dr that will validate that FQs has destroyed my health and life. Each year that goes by, it’s harder for Drs to believe that these affects last so long. Over two years ago during a surgery at Duke against my consent, Floxin soaked GELFOAM PLEDGETS and steroids were placed in my head and I am 200x worse. Lets not kid ourselves, TOPICALS are just as dangerous as any FQs and the Topicals need to be INCLUDED not EXCLUDED from that PN warning the FDA came out with in August of 13.


The perils of the topicals used on children for ear and eye infections should cause great concern and should be researched as well. What are these drugs doing to their little brains and bodies?


This is a bittersweet day for me. Four years ago today, my 93 year old dad died. He FELL at home and was taken to the hospital by a neighbor. By the time my husband and I arrived in Florida, my dad had no idea who we were. They THOUGHT he had pneumonia so they IV’d him with Levaquin. It turned out that he did NOT have pneumonia but he continued to hallucinate for 6 weeks and then died. He was sharp as a tack before Levaquin dripped into his body. He did have an aortic aneurysm for many years which was being watched but it ruptured on November 4th. I would have never connected the AA with FQs until I read this research paper dated October 5th 2015. So here is another RARE side effect that can occur, which it did in my dad’s case. How many others have died from AAs and had taken a FQ drug? It took 10 years for this report to come to light. Was the FDA aware of this research from Tawain?

Do you know that after each cystoscope, Urologists hand out the gift of one Cipro, thank you Bayer, for the “just in case ” scenario? I know this for a fact. Cipro is also given out FREE at pharmacy so therefore it is prescribed more.


Three minutes does not allow me time to talk about my own health issues but understand there are many but Dr. Boxwell’s slides just showed them. We have flares which come and go at the whim of these drugs. It’s the drug that keeps on giving even years later. It has no time constraints, it holds no barriers. Doctors are clueless. We get no warnings, doctors DO NOT report our concerns and they dint read the labels themselves!

NOW EVERYONE, THIS IS THE PART I WAS UNABLE TO READ AS I READ TOO SLOWLY AND MY 3 minutes were up!!!


We are all disabled in different degrees. Don’t judge a book by its cover. I miss my life, i miss reading , I miss being productive and I miss my salary. What I have is not the “aging process” as some Drs have told me, but FQ Toxicity.


Unfortunately there are millions of people who have not connected the dots because they don’t expect an antibiotic to do such harm. Some of these people have died and their families will never know that the FQs were the reason.


Drug reps are NOT the ones who should be educating the Drs on the uses of ANY drugs. The drug companies need to come forward with information they are hiding. Their studies are flawed. PLEASE STOP THE MADNESS of these drugs being handed out so indiscriminately.

Although I am not asking you to ban these drugs, I personally, if on my deathbed would rather die than experience any worsening of my life as it is now.
Thank you for your time. I waited 21 years to be heard!

Rachel Brummert (President of the Quinolone Vigilance Foundation):

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Note: Rachel’s slide presentation referenced is available HERE.

Good afternoon. My name is Rachel Brummert and I am the Executive Director of the Quinolone Vigilance Foundation. Neither the foundation, nor I, have any financial ties to this hearing.

[SLIDE ONE: Fire pictures/pictures of pills]

Fluoroquinolone antibiotics are incredibly powerful with the capability to save lives when used as a treatment of last resort for life-threatening bacterial infections like anthrax. These antibiotics have equal power to destroy lives when they are prescribed for routine infections like sinus infections and UTIs that don’t need their strength. Just as it is irresponsible to squelch a kitchen fire with the defenses we would mount against a wildfire, likewise, it is reckless to use a fluoroquinolone antibiotic to squelch a routine infection. There are safer, effective antibiotics for the treatment of routine infections in the event that an antibiotic is even necessary.

[SLIDE TWO- Pictures of my ruptures/scars]

I am living proof that the risks in using a fluoroquinolone to treat a routine infection far outweighs the benefits. In 2006, I was prescribed Levaquin for a sinus infection. Within weeks, my achilles tendon ruptured in a parking lot, the first of ten tendon ruptures I’ve suffered over nine years.

[SLIDE THREE- List of my adverse reactions with ICD9 codes]

A first-line of defense antibiotic like Amoxicillin, would have resolved my sinus infection, and I would not have been exposed to the relatively disproportionate risks of known fluoroquinolone-associated injury, which includes a progressive neurodegenerative disorder, from which I will never recover.

With just one prescription, a once-healthy wage-earner, parent, or grandparent – just like you, just like me – can no longer enjoy a reasonable quality of life and now lives with lifelong risks for the development of an illness that is life-threatening.

[SLIDE FOUR- HOW CAN THE FDA HELP?]

What can the FDA do to protect patients from profound, preventable harm? A preventable problem is a fixable problem. The FDA is responsible for protecting and promoting public health through the regulation and supervision of a wide variety of consumer products including prescription medications. Fluoroquinolone antibiotics are causing widespread disability and their overuse is also a contributing factor in the antibiotic resistance epidemic. Antibiotic resistance is such an important issue that there is a White House objective to do something about it. If fluoroquinolones are being prescribed for routine infections which don’t need their strength and they are disabling otherwise healthy patients, and their overuse is leading to an international epidemic, the answer is clear: The FDA must apply its highest level of scrutiny, regulation and surveillance of fluoroquinolones to achieve this shared goal.

Thank you for your time and consideration and for holding this very important meeting.

Linda Livingston:

I have 3 minutes to tell you about my side effects from Cipro, given to me for a simple UTI. I could take an hour trying to describe the two nightmarish months where my breathing was so suffocating I gasped for every single breath. Each night I had to take a pill to sleep and only got an hour if I was lucky. And each night before I took the pill I prayed I wouldn’t wake up. Words cannot describe the rage I feel for the torture I have endured.

I could tell you about the damage to the nerves around my neck that make it feel numb at times and like I am being choked at other times. I could tell you about the horrific olfactory nerve damage that made everything thing in the world asphyxiate me, making me a virtual shut in. I could tell you about my pericardial effusion, blurred vision, terrifying light show, excruciating back pain worse than when I had cracked ribs, or being bedridden for a month and having to have food and non-fluoridated water dropped off, and laundry picked up. I could tell you about my numb fingers and toes, constant bladder pressure, ravaged GI system and 32 pound weight loss in two months, with muscle waste and extreme weakness. There is the swelling over the ulnar nerve, the spasming uncontrollable fingers, the light sensitivity, sound sensitivity, newly acquired food sensitivities, electrical zaps in my knee and arm, popping in my spine and hip, extreme anxiety, depression, crying everyday for 8 months, and suicidal thoughts.

I could tell you about my fears —that my breathing will never again be normal; that my eyes will not improve or even get worse; that my DNA is permanently damaged or my fears surrounding the links to several eye diseases, ALS, Parkinsons and Altzheimers. No one deserves to have their life devastated for a simple UTI!

My life is so different from 9 months ago. I cannot work and worry about how I will pay rent, let along treatments which are not covered by insurance. I can’t meet friends for dinner or happy hour. I have not enjoyed a cup of coffee or glass of wine since January. I can’t exercise like I used to. (I was in incredible shape before this.) My diet is so restricted that there are few places I can go. I am tired all the time, and my anxiety prevents me from doing many things I used to do. My passion is theatre and I may never be able to perform again. There is little joy.

First we are poisoned, then we are left to fend for ourselves because doctors are mostly oblivious to any of the side effects. They are not reading labels or warnings. We are treated with ridicule and derision by the medical community, and then we are financially devastated as well.

If another country did this to us, they would be called war crimes. The pharmaceutical companies have known for decades about the hideous side effects. The FDA has allowed them to inappropriately market these drugs for simple infections. There was recently a GM car recall because of 78 deaths. These drugs may be responsible for up to 300,000 deaths (not to mention all the life altering side effects.) We are not just figures on a share-holders statement. We are people who have been tortured and have our lives decimated. So, why are you even still discussing it at this point?

Linda Landmon:

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My name is Linda Landmon. I’m here today with my husband David, we’re from Dallas Texas and I’m 58 years old.

In 2009 we bought our dream home that we planned to retire in. I had been self employed for 9 years working from home. I was an avid bicycle rider, I enjoyed swimming, entertaining , traveling, spoiling our 2 grandkids and I even had a personal trainer coming to my house twice a week.

Life was good !

But then things changed –

December of 2011 I was diagnosed with a kidney stone.

My Urologist gave me Levaquin “samples ” with no information on the medication or the side effects it may cause. My urine culture was negative for infection.

April of 2012 my Urologist gave me Cipro after a Lithotripsy , again I had no infection.

December of 2012 my Urologist surgically removed my kidney stone and again gave me Cipro. I had no infection this time either.

One week later, January 2013 I went to the ER with Kidney stone pain and I was given one IV of Levaquin and pain medication. My urine culture was negative for infection.

10 days later I went back to the ER with kidney stone pain and I was given 4 bags of Levaquin AND a prescription for Levaquin to take for 10 more days. My urine culture was negative for infection.

Since these medications I’ve been diagnosed with Peripheral Neuropathy, ringing in the ears, high anxiety , a torn rotator cuff, a torn meniscus , which has resulted in needing a total knee replacement , spinal stenosis and tendon damage in my foot. This has all led to depression and I’ve basically become a recluse. For me to speak here today is HUGE !

I’ve had numerous MRI’s , X-rays, steroid shots, I’ve been prescribed, Celebrex , Neurontin, Lyrica, Tramadol and Xanax.

I have a walker, crutches, a leg brace various boots and supports for my foot.

These drugs are prescribed way too often without any proof of infection. I know because it happen to me , FIVE TIMES.

Fluoroquinolones are the only antibiotics I’ve found that carry a Black Box warning and it hasn’t stopped doctors from passing them out like candy.

I didn’t have Anthrax, the Plague OR an infection. I had a kidney stone.

Christabelle Cruz Chajon:

Good afternoon Chair and Committee Members, my name is Christabelle
Chajon. I am 35 years old and live in Washington DC with my husband and
5 year old daughter.

Prior to February 2014, I was loving life. I was healthy and active, and on
no medications. I was a full-time mom with the ability to also work part-time
from home, and enjoyed exercising, hiking, reading, and playing music.

In February 2014, I went to the doctor for a lingering cough. I was
diagnosed with bronchitis and given a 5 day course of Levofloxacin. I
asked at the pharmacy if there were side effects, and was told they were
rare and that tendon damage was only a concern for elderly patients. After
the last pill, I woke in the middle of the night shaking, unable to speak, and
numb from head to toe with my heart racing, and my husband rushed me to
the ER. This happened 3 more times within 6 months after taking
Levofloxacin, and each time I was discharged with nothing more than heart
palpitations.

I also developed many other symptoms including insomnia, intense muscle
and joint pain and weakness, digestive issues, vertigo, fatigue, painful
neuropathy, cognitive impairment, and extreme chemical sensitivities. This
translated into changing my life completely – having to cancel planned
family trips, being unable to carry my daughter when she needed me,
falling asleep unexpectedly while caring for my daughter, being unable to
exercise and enjoy hobbies let alone walk and get out of bed some days.
Food that I ate with no problems before made me sick, and I also lost over
10% of my weight, which is attributed to my body no longer digesting fats
and proteins. Many of these symptoms I still struggle with today, and my
quality of life has declined tremendously. I do not work, and the proper
care and treatments I need are a financial burden on my family. It has
been a frightening struggle to say the least.

But what is most frightening is that most doctors fail to realize that
fluoroquinolones can cause this type of systemic damage. In my search for
help, I even encountered one doctor who was insulted that I considered
that my symptoms were caused by levofloxacin. How can that be when the
connection was obvious as I went from perfectly healthy to unable to get
out of bed and function normally most days?

I joined the Fluoroquinolone Toxicity Group online in the spring of 2014,
which at the time had around 2000 members, all who have suffered from a
constellation of symptoms. That number has more than doubled since
then. It is evident that Fluoroquinolone Associated Disability is not rare.

And per today’s meeting’s briefs, it’s been concluded that antibiotics don’t
make much of a difference on uncomplicated conditions such as sinusitis,
bronchitis, and UTIs; yet, potent fluoroquinolones are being prescribed for
them. The doctors who are inappropriately prescribing these drugs for
simple infections are either unaware of these warnings, or are not taking
them seriously. Limiting the indications to only include serious and lifethreatening
infections, full disclosure to patients about these drugs, and
adding FQAD to the warning labels of fluoroquinolones are absolutely
necessary to stop the countless number of lives damaged and even lost to
these drugs.

If you would like to share your testimony on this site (to archive it, for search engines to find it, or just because you want to) please send it to me through the Contact link above. I am happy to post any and all testimony in any form.

Thank you again to everyone who came to the meeting yesterday! It truly was a huge victory! Great job, everyone!!!

 

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Is Fluoroquinolone Toxicity “Real?”

What is required for fluoroquinolone toxicity to be “real?”

Most of the symptoms of fluoroquinolone toxicity are listed on the warning labels.

Tendinitis? Yup, listed on the warning label. Muscle weakness? Yup, that’s there too. Cardiovascular collapse, loss of consciousness, tingling, pharyngeal or facial edema, dyspnea, urticaria, and itching? They’re right there on the warning label. Liver failure is there too – that’s what “hepatic failure” means. “Convulsions, increased intracranial pressure (including pseudotumor cerebri), and toxic psychosis have been reported in patients receiving fluoroquinolones, including ciprofloxacin.” Serious central nervous system effects like, “dizziness, confusion, tremors, hallucinations, depression, and, rarely, psychotic reactions have progressed to suicidal ideations/thoughts and self-injurious behavior such as attempted or completed suicide” are also listed on the warning labels. Permanent peripheral neuropathy is listed too. So are musculoskeletal disorders—though the warning label only notes that those happen in pediatric patients—kids. Prolongation of the QT interval, renal impairment, phototoxicity and diarrhea are also listed.

Do the warning labels leave some symptoms of fluoroquinolone toxicity out? Sure. Even the FDA acknowledges that, “While most of the individual AEs (adverse effects) that exist within FQAD (fluoroquinolone associated disability) are currently described in fluoroquinolone labeling, the particular constellation of symptoms across organ systems is not.” The warning labels are a good place to start though.

If someone takes a drug, then develops side-effects that are listed on the drug warning label, it’s pretty reasonable to think that what they’re experiencing is an effect of the drug. It’s not only reasonable, it’s probable.

If thousands of people experience similar adverse effects after taking a drug, those adverse effects are likely caused by the drug.

Thousands of anecdotes certainly help to build a case, but they are still anecdotes, so scientific experimentation is needed to show that a drug is as damaging and dangerous as people claim it to be.

There are more than 200 peer-reviewed journal articles about fluoroquinolones in the Research section of the Links & Resources page on this site. There is PLENTY of evidence that fluoroquinolones do a massive amount of damage to the human body.

There is PLENTY of evidence that fluoroquinolones damage mitochondria, increase ROS, deplete antioxidants, deplete iron, deplete magnesium, damage the microbiome, downgrade GABA, are endocrine disrupters, cause lysosomal disorders, form poisonous metabolites in the liver, activate mast cells and release histamine, AND MORE.

Can any one of those things cause a multi-symptom illness? Yes, of course they can. And fluoroquinolones DO cause multi-symptom, often chronic, illness.

Despite all that, there is not a diagnostic code for fluoroquinolone toxicity, and fluoroquinolone toxicity is not taught in medical school. Many doctors do not recognize fluoroquinolone toxicity when they have a patient who is dealing with it. (Though that is changing—more and more doctors are recognizing fluoroquinolone toxicity, and that is a very good thing.) And, despite all the damage that fluoroquinolones do to cells, there is no test that shows fluoroquinolone toxicity.

A diagnostic code and a test will likely be required for some people to believe that fluoroquinolone toxicity is real. We should fight for those things, because they’re important in getting the problem recognized and the solution sought.

Even without the diagnostic code or adequate test, fluoroquinolone toxicity IS REAL. It is acknowledged in FDA documents and backed up by hundreds of peer-reviewed articles. If someone chooses to ignore that evidence, well, they’re operating on faith in their notions of infallible doctors, not the real, scientific evidence that shows the damage that fluoroquinolones do to cells.

Regardless of what anyone thinks, your pain and your experience are real. I know that it hurts when people assert that your pain isn’t real, or that you’re imagining what you know to be true. It sucks, to say the least. But you know your body, and you know what happened to you. Your truth, and your experience, matter. Other people’s beliefs about your condition don’t.

 

 

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An Official Name: Fluoroquinolone-Associated Disability (FQAD)

For the FDA’s November 5, 2015 meeting to review “The Benefits and Risks of Systemic Fluoroquinolone Antibacterial Drugs for the Treatment of Acute Bacterial Sinusitis (ABS), Acute Bacterial Exacerbation of Chronic Bronchitis in Patients Who Have Chronic Obstructive Pulmonary Disease (ABECB-COPD), and Uncomplicated Urinary Tract Infections (uUTI)” a 617 page report was released by the FDA. You can access it HERE if you want to read it in its entirety.

In the last post, I noted that the FDA report said that fluoroquinolones have not been shown to be any better than a placebo at treating sinus infections, bronchitis in those with COPD, or uncomplicated urinary tract infections. In this post, I will point out that the FDA has given those suffering from fluoroquinolone toxicity an official name. Per the report:

“A review of the FDA Adverse Event Reporting System (FAERS) was performed to characterize a constellation of symptoms leading to disability that had been observed during FDA monitoring of fluoroquinolone safety reports. This constellation of symptoms will be referred to in this review as ‘fluoroquinolone-associated disability’ (FQAD). While most of the individual AEs that exist within FQAD are currently described in fluoroquinolone labeling, the particular constellation of symptoms across organ systems is not. Individuals with FQAD were defined as U.S. patients who were reported to be previously healthy and prescribed an oral fluoroquinolone antibacterial drug for the treatment of uncomplicated sinusitis, bronchitis, or urinary tract infection (UTI). To qualify, individuals had to have AEs reported in two or more of the following body systems: peripheral nervous system, neuropsychiatric, musculoskeletal, senses, cardiovascular and skin. These body systems were chosen as they had been observed to be frequently involved with the fluoroquinolone reports describing disability. In addition, the AEs had to have been reported to last 30 days or longer after stopping the fluoroquinolone, and had to have a reported outcome of disability.”

That recognition from the FDA is EXCELLENT progress!

I don’t know whether or not FQAD will be put into diagnostic manuals, or if it will be coded for in insurance systems. I hope that those are future steps that will be taken.

So far, in the first 20 pages of the 617 page FDA report, they have noted that fluoroquinolones are no more effective than placebos in treatment of sinus infections, bronchitis in those with COPD, and uncomplicated urinary tract infections. They have also noted that fluoroquinolones can cause a constellation of symptoms across multiple body systems, and that those symptoms can lead to disability.

It is not appropriate to cause, or even to risk, disabling adverse effects through utilization of a drug that is no more effective than a placebo at treating sinus infections, bronchitis in those with COPD, and uncomplicated urinary tract infections. I hope that the FDA changes the recommended uses for fluoroquinolones in recognition of this.

I hope that the naming of FQAD increases recognition of the horrible adverse effects of fluoroquinolones. With recognition, hopefully a more prudent and appropriate approach to use of fluoroquinolones will occur.

Post-publishing edit – While it is a wonderful step in the right direction that the FDA acknowledged that fluoroquinolones can cause a constellation of symptoms that is not adequately noted in the warning label, I may have jumped the gun a bit in calling it an “official” name. FQAD is the term that the FDA is using for the purposes of the November 5th hearing. It is not a diagnostic code that your doctor can look up in his or her diagnostic manuals yet. I hope that it’s a step in that direction, but we’re not there yet. Celebrating the FDA acknowledgement is in order, but we still have a ways to go. I apologize for not being more clear in the post before I originally published it!

 

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Dr. Perlmutter Speaks About the Microbiome and Advocacy

Yesterday I went to a wonderful event at a Natural Grocers where Dr. David Perlmutter spoke about the importance of nourishing your microbiome with healthy foods.

According to his amazon.com bio, “David Perlmutter, MD, is a globally recognized leader in brain science. He is the recipient of the Linus Pauling Award, editor-in-chief of the global online and print peer-reviewed journal Brain and Gut, and author of the #1 New York Times bestseller Grain Brain, The Grain Brain Cookbook, Brain Maker, The Better Brain Book, Raise a Smarter Child by Kindergarten, and Power Up Your Brain. He lives and practices in Naples, Florida.”

Dr. Perlmutter understands the connections between microbiome health and brain health. He speaks out about the connections between microbiome destruction via over-use of antibiotics, and chronic illness. He has acknowledged fluoroquinolone toxicity on news-casts, and has made videos about fluoroquinolone-induced peripheral neuropathy.

His presentation was wonderful and if you get the opportunity to see him speak, I recommend that you do so.

I had the opportunity to thank Dr. Perlmutter for the work he’s done speaking out about fluoroquinolone toxicity.

I also had the opportunity to ask him, in the Q&A section in front of the whole audience, what can be done to encourage more doctors to understand that fluoroquinolone antibiotics are dangerous drugs that should not be used frivolously. He responded that speaking out was the way to bring about change, and that doctors and other people can be educated about the dangers of fluoroquinolones one person at a time.

Every time we share an article that connects microbiome destruction to chronic illness (several are linked to HERE), we encourage people to understand that microbiome health is critical for all areas of health, and that throwing a nuclear bomb into the gut with fluoroquinolones (information about the dangers of fluoroquinolones can be found HERE), can be devastating.

Dr. Perlmutter also spoke about how mitochondria are ancient bacteria, and every time we share information about how fluoroquinolones damage mitochondria, we are also increasing the chances of doctors and other people making the connections between mitochondria-damaging drugs and chronic illness.

The outreach advice I got from Dr. Perlmutter and Dr. Wahls (in Episode 14 of The Floxie Hope Podcast) was to keep screaming, keep telling people about fluoroquinolone toxicity, and one person at a time, minds will change.

For fluoroquinolone toxicity to be on the radar of someone as influential as Dr. Perlmutter is a HUGE step in the right direction for us. He reaches millions of people through his books, web site, journal, practice, and other contributions. If you get a chance to thank him for his fluoroquinolone toxicity awareness efforts, please do so. He is brilliant, thoughtful, interesting and a wonderful advocate. He has my respect and admiration.

 

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Quinolone Vigilance Foundation (QVF) Update

Quinolone Vigilance Foundation (QVF) Update

I asked Rachel Brummert, President of the QVF, to update the January, 2014 post about the QVF – https://floxiehope.com/2014/01/29/the-quinolone-vigilance-foundation-qvf/.  It turns out that a lot of updating needed to be done, so I’m making the update a whole new post.  Thank you to everyone involved with the QVF for all your efforts!  

There is a non-profit, charitable foundation devoted to raising awareness about the dangers of fluoroquinolone antibiotics and fluoroquinolone toxicity, advocating for victims, educating the medical community, and to funding research on fluoroquinolone toxicity. It is called The Quinolone Vigilance Foundation (the QVF) – www.saferpills.org.

Following is some information about the QVF:

History and Purpose

The QVF is a registered 501(c)(3) non-profit foundation established in 2009 and Incorporated in 2012. Its founders sought to establish professional credibility by reviewing the existing scientific literature that addressed adverse reactions from fluoroquinolones; recruited and networked medical researchers; and stimulated new research into this poorly understood issue. The QVF branched out in 2014 to educating the medical profession.

“Our mission is four-fold: Educating the medical profession about fluoroquinolones, advocating for victims of fluoroquinolone toxicity, raising awareness in the United States and abroad, and research. Advocacy, education, and research go hand in hand and gives a complete picture of the problem. Helping victims already affected and getting ahead of it so damage doesn’t happen in the first place is something we are very passionate about and we work hard to achieve,” explains Rachel Brummert, Executive Director of the QVF.

Advocacy and Outreach

  • In the spring of 2014, the QVF began educating doctors in local practices and major medical centers.
  • QVF has held six fundraisers since 2013 to raise funding for advocacy and education, and for the University of Rochester research study.
  • QVF sells awareness merchandise:

www.cafepress.com/quinvigil

https://www.bravelets.com/bravepage/fluoroquinolone-life-qvf

http://konectidy.com/charity/quinolone-vigilance-foundation/

  • QVF is in early stages of bringing in two new research studies.
  • QVF attended two FDA Hearings
  • QVF continues to work with media outlets to warn viewers of the dangers of fluoroquinolone antibiotics. We provide information to reporters and assist in finding victims to be interviewed.
  • QVF receives many requests from doctors offices and pharmacies for brochures and awareness cards to display. We also offer free brochures to anyone who wishes to pass them out in their communities. In addition, we offer downloadable brochures on our website under the Resources tab for anyone who wishes to print them out themselves. http://www.saferpills.org/print-download/
  • Author, actor and international speaker Josh Rivedal asked QVF to participate in the i’Mpossible Project and the upcoming book The i’Mpossible Project: Volume 1 Reengaging With Life, Creating a New You due to be released on January 13, 2016 and available for pre-order on September 16, 2015. Per an agreement with the publisher, 100% of proceeds made from our contribution to the book will be donated to QVF and no person shall personally gain from the book. QVF has been approached by several media outlets to discuss the book and about the topic of fluoroquinolone toxicity. The book will be available in paperback and e-book, at major bookstores like Books A Million, Barnes & Noble and Amazon, and online as an ebook at BN.com, Kindle, iTunes, Nook, and Google Books. The i’Mpossible Project is a collection of powerful stories. The stories in this first volume are all about overcoming obstacles, reengaging with life, and creating new possibilities. Among the other authors are Academy Award Winner James Lecesne, and actress Ali Stroker of Fox’s GLEE. We are honored to participate and to bring fluoroquinolone toxicity awareness to an international audience.
  • QVF produces awareness videos which can be readily shared to spread awareness and participates in podcasts and radio shows.

Television Media stories featuring QVF volunteers

Arizonahttp://www.abc15.com/news/local-news/investigations/experts-top-antibiotic-carries-hidden-side-effects-not-listed-on-the-label

Arizonahttp://www.azcentral.com/videos/news/local/arizona/2014/11/04/18450053/

Michiganhttp://www.wxyz.com/news/local-news/investigations/experts-top-antibiotic-carries-hidden-side-effects-not-listed-on-the-label

Indianahttp://www.theindychannel.com/news/u-s-world/experts-top-antibiotic-carries-hidden-side-effects-not-listed-on-the-label

Florida- http://www.wptv.com/money/consumer/experts-top-antibiotic-carries-hidden-side-effects-not-listed-on-the-label

Ohiohttp://www.wcpo.com/news/health/healthy-living/levaquin-popular-antibiotic-carries-side-effects-not-listed-on-label

Californiahttp://www.10news.com/news/investigations/patients-experts-popular-antibiotics-could-cause-permanent-damage-11242014

Georgiahttp://www.wsbtv.com/videos/news/channel-2-investigates-complaints-about-popular/vDDZZS/

Georgiahttp://www.wsbtv.com/news/news/local/patients-suffer-devastating-side-effects-popular-a/nj4Br/

Georgiahttp://www.wsbtv.com/videos/news/another-widow-says-medication-killed-her-husband/vDD6mw/

Californiahttp://losangeles.cbslocal.com/2015/03/04/southland-firefighter-says-popular-antibiotic-stripped-him-of-his-career/

Missourihttp://www.kctv5.com/story/28170151/fda-evaluates-popular-antibiotic-that-patients-say-makes-them-sicker

Virginiahttp://wric.com/2015/04/21/8news-investigates-could-this-antibiotic-permanently-damage-your-health/

Virginiahttp://wric.com/2015/05/20/8news-investigates-doctors-left-in-dark-about-prescription-drug-dangers/

Articles featuring QVF

Care Novate: http://carenovatemag.com/personal-account-prescription-destruction-black-box-warning/

United Kingdom: http://born-in-newyork.com/ciprofloxacin-antibiotic-resistance/

Washington Post: http://www.washingtonpost.com/national/health-science/it-pays-to-read-the-warnings-when-you-open-up-a-prescription/2015/08/03/a29e11b4-d70e-11e4-b3f2-607bd612aeac_story.html?tid=hpModule_9d3add6c-8a79-11e2-98d9-3012c1cd8d1e

Tulsa World: http://www.tulsaworld.com/opinion/idelle-davidson-the-risky-business-of-taking-antibiotics/article_bcce562a-bd78-5d92-b156-6926115be61c.html

Connecticut- http://www.courant.com/consumer/hc-ls-antibiotics-drug-reaction-20150821-story.html

Italy: http://m.ilgazzettino.it/m/gazzettino/articolo/NORDEST/1270894

QVF Staff/Volunteers

The QVF is comprised of a board of directors, non-board volunteers, and ambassadors/advocates from all over the world: The United States, Canada, Ireland, the United Kingdom, Belgium, Australia, Algeria, and Italy.

The current volunteer staff positions are as follows:

Board

Rachel Brummert – Executive Director and President

Matthew Arnold – Vice President

Donna Schutz – Assistant Director and Ambassador Coordinator

Leslie Day – Corporate Secretary

Christina Manthos -Sorrell – Treasurer

Dr. Deanna Minkler – General Board Member

Dr. Joe Hudak – General Board Member

Non-board

Victoria Chiovare – Assistant Fundraising Director

Jenny Frank- Public Relations Director

All QVF positions are staffed by volunteers who generously donate their time and talents to promote the mission and values of the organization. No one within the organization receives compensation of any kind.

More information about the QVF can be found on www.saferpills.org and you can sign up for quarterly newsletters to keep up to date on QVF projects and activities.

To donate to QVF: donations@saferpills.org. All donations are tax deductible.

 

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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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Taking Career Opportunities

People who read and follow Floxie Hope are often surprised to hear that I have a day job.  Yes, I spend a lot of time on Fluoroquinolone Toxicity advocacy.  No, it does not pay the bills.  So, I have one of those job things.

Today, May 27, 2015, is my last day at the job I’ve had since March 1, 2011.  I’m moving on to a similar organization (I’m leaving the names of both my current and future employer out of this… just ‘cause) where I’ll be doing the same line of work, but the new job will give me more responsibility, opportunities, and money.  It’s a step up in my career and I’m excited for the future.

All change is bitter-sweet though….. and a little scary.

I got floxed in December, 2011 and there was a time when I thought that I wouldn’t be able to do my current job, much less move on to a job that required more of me – more work, more intellect, more problem-solving, more travel, more energy, etc.  My reading comprehension, concentration, memory and ability to relate to others were horrible after I got floxed.  I didn’t feel capable of doing my job for months after the flox-bomb went off in me.  Things that I did with ease before I got floxed suddenly became difficult.  I had trouble doing the most basic tasks.  I was scared that I no longer had the mental capacity to do the tasks that were required for the job, and that I was going to get fired.

My fears were largely unfounded, because my employer was incredibly patient with me.  My boss and co-workers saw me go from being strong and athletic to barely being able to walk a block, and they were concerned.  They let me take time off of work to go to appointments as necessary.  They saw that my mobility was hindered and did thoughtful things for me – like getting my print-outs from the copier and bringing them to me.  They believed me, and told their loved ones to stay away from the drugs that hurt me.  I am forever grateful to them for their support, sympathy and kindness.  They are wonderful people and it’s a good organization.

Around one year post-flox I had an annual performance review with my boss.  I thanked him profusely for putting up with my loss of mental capacity.  He seemed perplexed by my assertion that my brain had been fried for the last year.  As far as he was concerned, I was doing fine.  I’m glad that my memory loss and other cognitive deficits weren’t as apparent to him as they were to me.  (Floxie friends – know that you may perceive your cognitive issues to be worse than others see them.  I know what it’s like to feel stupid, but you’re not stupid, and other people will be more forgiving of any mental lapses that you have than you will be toward yourself – so try to be kind to yourself.)

I will always feel grateful for my employer for standing by me while I was sick.  They may not see it as a big burden, but I see it as a great blessing that I am thankful for.

It is time for me to move on from a very good organization though.  I have opportunities to pursue, and I’m hopeful that my new employer will be as good to me as my last employer.

There was a long period of time – years – when I truly didn’t think that I would be capable of furthering my career and taking a job that required more of me.  I was grateful for my position, but I was trying my hardest not to lose what I had, and moving onward and upward weren’t possibilities that I could even consider.  Now those possibilities are a reality, and I have the capacity to take new opportunities.  It’s nice, and I’m thankful for the support in my past that has allowed me to get to these opportunities to better my future.

I hope that all my Floxie friends recover.  May you all be blessed with opportunities and improving health.  Both happened for me, and I am hopeful that they will happen for you too!  Hang in there – it gets better.

Hugs,

Lisa

 

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What is Fluoroquinolone Toxicity? (Part 2)

 

The first post I wrote on Floxie Hope was a post entitled, What is Fluoroquinolone Toxicity???  It went over some theories that I had heard about FQ toxicity, and, more importantly, what FQ toxicity felt like.  It was a good start.

Since I wrote that post, I have done hundreds of hours of research on fluoroquinolones.  The research has resulted in this, updated post –

WHAT IS FLUOROQUINOLONE TOXICITY? on Hormones Matter.

It goes over some theories about the damage that fluoroquinolones do to the body.  It’s clear that fluoroquinolones do a lot of damage.  I wish that there were more researchers putting all the pieces together.

Luckily, understanding exactly what fluoroquinolone toxicity IS, isn’t required for healing.

 

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The Thyroid, Hormone and Autoimmune Connections to FQ Toxicity

Hormones Matter Logo

This article puts SO MANY pieces of the FQ toxicity puzzle together, I had to share and keep it on this site.  I didn’t write it, but the author did an AMAZING job at explaining the connections between fluoroquinolone antibiotics and thyroid problems, so I’m sharing it on Floxie Hope.  Please share the article with your doctors.  It has a lot of amazing, helpful information in it.

FLUOROQUINOLONE ANTIBIOTICS AND THYROID PROBLEMS: IS THERE A CONNECTION?

It’s published on Hormones Matter.  Those hormonal systems do, indeed, matter.  They’re so delicate and non-linear though, that they’re rarely studied.  Not looking at them doesn’t make them inconsequential though.

 

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The Floxie Hope Podcast Episode 5 – Rose Casanova

Floxie.Hope.Podcast.1800.72.dpi

Rose joined me for Episode 005 of The Floxie Hope Podcast.  In this episode, Rose shares her journey through fluoroquiolone toxicity and discusses how getting floxed changed her perspective on medicine.

You can listen to Episode 005 of The Floxie Hope Podcast through iTunes –

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

It will be greatly appreciated if you log into iTunes and leave a review of The Floxie Hope Podcast.  Subscriptions through iTunes (or any other podcatcher) are greatly appreciated too.  Thanks!!

You can also listen to the podcast directly through this link –

http://www.floxiehopepodcast.com/episode-005-rose-casanova/

Thank you very much for listening to The Floxie Hope Podcast!  Getting our voices out there, and telling our stories, is helpful.

Thank you, Rose, for sharing your story!!!!

 

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We must take time to grieve

These beautiful words were written by Catherine Zimmerman:

Grief and loss are a part of living with fluoroquinolone injuries. While living with this post drug-induced reality, we must take time to grieve. Whether you are the survivor or supporter of the floxed, part of recovery includes tending to grief. 

My adult son was floxed in October. I took a leave of absence from my job to support him and his family during the early days of complete disability. His profound loss of health, the many unknowns about the extent and trajectory of his injuries and the uncertain pathway to healing create a context for a complex grief process. Yet little has been written about the need to acknowledge our grief, and the important work of mourning. Grief occurs as the result of how profoundly fluorquinolones change lives, thrusting individuals and families into a state of disequilibrium caused by illness.

There are many potential losses associated with fluoroquinolone injuries including the loss of health and all the small daily activities and certainties that health affords. Roles such as family breadwinner or athlete may also be altered, and the many small roles that make up the simple pleasures of daily life – may also be beyond reach. A person who has been floxed loses the certainty of health. Changes may occur in terms of how life is centered… now time, energy and money are consumed by managing symptoms and how to survive and heal the body. An image of oneself as strong and capable may be replaced by an acceptance of the how fragile we really are, if one little pill can so totally alter our lives.

Each perceived loss is felt and therefore must be grieved. It is necessary to mourn our losses… even as family members, caregivers and supporters. If those we love have been floxed, their lives and ours have been altered. As a mental health professional, I recommend acknowledging these losses through a conscious grief journey. Be willing to learn about grief and mourning. Find the courage to talk about your grief. Surround yourself with those who will listen. You are not crazy and you are not alone.

Thank you, Catherine, for so beautifully articulating how many fluoroquinolone victims and loved ones feel.

 

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Happy Anniversary Floxie Hope!

I started www.floxiehope.com one year ago today – on June 20, 2013.  It’s my floxiehopeiversary / blogiversary / siteiversary.  A drink will be had to celebrate.

In the year that it has been up, Floxie Hope has had 177,547 page views from, I dunno, a somewhat smaller number of individual viewers.  I have argued that the number of people that have seen my articles is close to the number of page views for Floxie Hope because I publish a large portion of my articles on other sites – www.hormonesmatter.com and www.collective-evolution.com.  I have no idea how many people have viewed my articles on those sites, but I like to think that the number of page views on Floxie Hope is a close approximation to the number of people reached.  177,547 people reached in a year – not too bad, if I do say so myself.

One of my posts, How Pharmaceuticals Came To Be The 4th Leading Cause Of Death In America, on Collective Evolution, has 12,000 Facebook shares, and it got picked up by Real Farmacy and got another 9,400 shares.  Awwww, yeah!  Sorry for tooting my own horn, but I’m really pleased about how many people have read what I’ve written about the dangers of fluoroquinolones.

Most people need to hear a message a few times before they believe it to be true.  Some people heard about the dangers of fluoroquinolones for the first time through something that I wrote.  Some people heard it a second or third time, and started to believe that it was true after reading one of my articles.  Some people went back to the Links & Resources page of Floxie Hope and noted that there are hundreds of peer reviewed journal articles on the dangers of these drugs.  Some people looked up the sources that I cited and realized that I may actually know what I’m talking about when I say that cipro, levaquin, avelox, floxin and the other fluoroquinolones are dangerous drugs that are hurting people on a cellular level.  The message is sinking into people’s consciousness one viewer at a time.

I’m pretty pleased about the number of people reached.  The word is getting out.

An amazing community has been formed on www.floxiehope.com.  If you look through the comments, you’ll see that wonderful, intelligent, insightful people have provided support and encouragement to their fellow floxies on Floxie Hope.  I am so pleased and honored to know each person who has shared his or her knowledge and insight.  Your words of wisdom and your encouragement are greatly appreciated!

I have come to consider the people who I correspond with about fluoroquinolone toxicity to be friends.  My floxie friends are strong, resilient, interesting, thoughtful, smart, generous people that I am so happy to have in my life.  🙂  I’m sorry that we have come together in the way that we have.  But alas, some good can come from bad, and the relationships between floxies are as valuable and precious as any other relationship.

The feedback that I get from the people who have been positively affected by Floxie Hope keeps me going.  I hear from people who let me know that the information on Floxie Hope has given them guidance, direction, and, most importantly, hope.  I tear up with joy when a friend tells me that an article that I wrote helped him to convince his doctor not to prescribe fluoroquinolones frivolously; or when I hear that what I wrote has helped the family of a floxie friend to understand what she is going through; or when I hear that the message of hope and resilience that I am trying to spread saves a relationship or even a life.

I’m glad that I could help.

You are not alone.  None of us are alone in this struggle.  We have each other.  It’s an honor to be part of a community of people that supports and cares for its members.  None of us ever wished to be a part of the floxie community, but it’s nice that while we’re here, we have great people around providing encouragement and support.

A year ago today, I started Floxie Hope because I knew that I needed to hear stories of hope and healing when I was sick and terrified.  When I was sick, I needed to know that some people recover and I needed to hear that I would be okay.  I ended up getting that message from other places, and through time, trial and error.  Now people can get that message through this site.  The stories of hope, healing, perseverance, strength, etc. that are on Floxie Hope have helped so many people, and I am so thankful to everyone who has provided their story.  You are all appreciated!

I think that I have been successful in making Floxie Hope a place where people can gain hope and help.  It couldn’t have been done without the rest of you, so I thank each and every one of you who has helped by reading, sharing, commenting and/or writing for Floxie Hope.

The next step will be to make change.  There is nothing that is okay about people getting hurt by fluoroquinolones.  Fluoroquinolones are dangerous drugs that should not be used frivolously.  The fact that they are being used frivolously and that they are hurting people is wrong.  It is a problem and it needs to change.  We, as a community, will make it change.  We have the truth, and quite a bit of scientific evidence on our side.  With some perseverance, intelligent strategy and luck, we’ll make it happen.

Advocacy is something that can be done when you have your strength and health back.  Those who don’t have the strength or health to advocate need hope.  I hope that you gain hope from this site.  It’s what it’s here for.

Xoxo

-Lisa

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Six Word Essays about Fluoroquinolone Toxicity

Following are 6-word essays about fluoroquinolone toxicity – an adverse reaction to Cipro, Levaquin, Avelox or other fluoroquinolone antibiotic – written by people affected by fluoroquinolone toxicity.  Having only six words with which to communicate a message forces people to be succinct.  These essays are succinct and they are poignant.  They express the pain, frustration and devastation that comes with getting poisoned by a fluoroquinolone.

I don’t tweet, but apparently the hashtag #sixwords is a popular one.  If anyone who reads this who is into tweeting can please tweet any of the 6-word essays that resonate with them to both #sixwords and #fqtoxicity, your help will be greatly appreciated!  (Or, if you want to, please feel free to tweet this whole post.)  Thank you!

Six Word Essays About Fluoroquinolone Toxicity

Roses are Red, Fluoroquinolones are Poison

Ciprofloxacin:  Another way of saying death.

My doctor said Cipro would help.

My medical necklace says “NO Fluoroquinolones!”

I didn’t consent to this shit!

Climb the Rockies? Can’t take Cipro.

Before Cipro, my career was great.

Discover disability income by taking Cipro.

Cipro did not heal, it harmed.

All antibiotics are not the same

Cipro: my living nightmare through hell.

Cipro: best cure for loving life!

Bayer with me, I’ve been floxed.

Took Levaquin, now I can’t walk.

Fluoroquinolones – chemo drugs masquerading as antibiotics

Took Avelox, now I can’t think.

Bayer is corrupt. Bastards poisoned me.

LIE: Levaquin hurts only the elderly

Kevorkian got life. Bayer got money.

Just one pill can unleash hell!

Need a change? Take Cipro twice.

Fluoroquinolones ruined my career and life

Cipro a life of living HELL

Torn tendons.  Going blind.  NOT fine.

With generic Fluoroquinolones you can’t sue

Fluoroquinolones= Life altered never the same

Five Levaquin= healthy life nearly destroyed.

Time brings recovery and dreams rebuilt

Fluoroquinolones, designed antibacterial drug, kills people.

No one knows how fluoroquinolones work

Anthrax would have been much quicker.

Fluoroquinolones, the drugs that keep taking.

This is what poisoning looks like

Cipro attacks bacteria and your life.

One-stop shopping body damage, take Cipro.

Is this medicine in the Chemo?

No FQ prescription without infection Please

My feet hurt.  I can’t think.

The tests say it’s not real

Life taken away by Antibiotic Levaquin!

Doctors can poison you.  Stay away.

Levaquin tarnished Golden years beyond repair!

Mystery illness?  Look at your antibiotics.

Doctors  – STOP DOING THIS TO PEOPLE!

Fluoroquinolones are all huge mind blowers.

Fluoroquinolone toxicity – this is not okay!

This situation is ridiculously fucking stupid

Forevermore climbing out of my coffin

Please stop poisoning the American people.

Cipro destroys all connective tissues, disabled.

Life before Cipro J  life after Cipro L

Age 36 feel 100 thanks Cipro

I fucking hate the poison LEVAQUIN

Fluoroquinolines woke me up, Big Pharma

Southern Belle caught in Levaquin Hell

Fluoroquinolones have to be FDA retested

Keep fluoroquinolones for yourselves, Big Pharma

For your safety say No Fluoroquinolones

Levaquin cripples/disables young healthy athletes.

Levaquin is a portal to hell.

levaquin: How could doctor prescribe poison?

Taking fluroquinolones is playing Russian roulette.

Visit doctor get levaquin; the END.

My doctor quit using them. Yay!

Fiendish floxie fortune found friends forever!

Ten days Levofloxacin, five months bedridden.

Cipro levaquin Avelox Danger Danger Danger

Cipro Levaquin Avelox Top Chemical Reactors

One little pill ruined his life

Levaquin hits market; mystery ailments rise.

My wasted Toxic Body By Levaquin!

Levaquin: perfect poison masquerades as antibiotic

Got mitochondria? Kill them with levaquin!

Levaquin changed my fucking language ha!

Levaquin/Cipro: Big Pharma’s stealth bombs

Fluoroquinolones : population control in little pills

FDA lets levaquin mutate your DNA!

Levaquin has taken away my strength.

Fluoroquinolones: Head to Toe Super Toxicity

Need Skull and Crossbones? That’s Fluoroquinolones

Bayer profiting over your dead body!

Selling Levaquin because illness equals profits

Levaquin Restyled My Body, Head, Hair

Cipro / Levaquin destroyed my health forever

Want fibromyalgia? Take levaquin and watch!

Look at the mitochondria you fools!

Cipro! Because Bayer wants sick people!

Recovering ever so slowly thank God

Levaquin: your pill to rapid ageing!

SLUT here, Southern Lady utterly toxic!

Crippled overnight? Did you take Levaquin?

The Fluoroquinolone Train Destination: PURE HELL

Thank you, Levaquin, for the Disaster!

I will recover – just watch me

My doctor mutated me with Levaquin!

I didn’t consent to genetic modification!

Levaquin forced Bugs Bunny to retire.

Humpty Dumpty got poisoned by Cipro

Cipro didn’t kill me.  I’m alive.

Big Pharma is careless with chemo

Fluoroquinolone Antibiotics damage tendons, nerves, DNA

Crimes against Humanity continue; seemingly unstoppable!

Levaquin: watch your life fade away!

Levaquin mutant seeks healthcare, doctor runs.

Levaquin flushes Hippocratic oath down drain!

Criminals get free pass. Thanks FDA!

Doctor poisons patients. Calls patients crazy.

FDA grants Bayer permit to poison!

Floxies win war against criminal corporations!

Cipro, Levaquin, Avelox FQ you up!

I will never be the same!

Life’s a bitch, then you die.

Cipro, a CHEMO drug, ….disabled me!

Levaquin, the beginning of the end.

Body blowing mind altering antibiotic lie!

Know what meds not to mix

Fluoroquinolones – stealth weapons of mass destruction

Fluoroquinolones – poison comes in many disguises

Big Pharma is not your friend

Floxie friends work together through adversity

Fluoroquinolones – the biggest medical travesty ever

Never give up, never give in

 

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What Getting Poisoned Looks Like

People think that getting poisoned looks like this:

But in the real world, it looks like this:

People whose cells are being destroyed from the inside out, often look fine.  Looks can be deceiving.

Everyone with an invisible or mysterious illness should ask the question – Were you poisoned?

Something that everyone who suspects that they may have been poisoned should note is that much of the damage, the poisoning, is indirect.  Pharmaceuticals (fluoroquinolones included) and environmental toxins damage mitochondria and, after reaching their tolerance threshold for damage, the mitochondria respond by producing poisonous reactive oxygen species (also known as oxidative stress).  Those reactive oxygen species (peroxynitrite is a particularly toxic one) that result from mitochondrial damage cause multi-symptom chronic illnesses.  It should be noted by people with chronic fatigue / M.E., that mitochondria are the energy centers of our cells and that damage to them can result in debilitating fatigue.  It should be noted by people with fibromyalgia that mitochondrial damage and oxidative stress have been shown to damage nerves and cause body-wide pain.  Autoimmune diseases have also been linked to poisoning, and also to mitochondrial damage.

Mitochondrial damage is tricky in that the tests to show it are woefully new and under-utilized.  Muscle biopsies can show mitochondrial damage, but they’re invasive and not very reliable.  Lactate doublets are a sign of mitochondrial damage, but the research behind them is new and utilization of MRIs to test for lactate doublets are rarely used.

The fact that the tests don’t show anything means that the tests are inadequate (and that they don’t show mitochondrial damage / oxidative stress), not that the problem is “in your head” or that it’s not chemical, or that you haven’t been poisoned.

People who are poisoned are in pain, they are fatigued, they can’t think straight, they are unable to function at the level that they used to.  That should sound familiar to everyone with fibromyalgia, CFS/ME and even autoimmune diseases.  Were you poisoned?  When?  By what?  And by whom?

If doctors looked at the mitochondria, they would see the destruction of the poison.  But they don’t look at mitochondria.  As long as they don’t look at mitochondria, they can tell themselves that their drugs are safe; that they’re not poison.  Ignorance is bliss for the entire medical profession and the FDA.  Too bad their ignorant bliss isn’t reality.

Look around you.  The chronically ill people around you are telling you something.  This is what the poisoning of America looks like.

*******************************************************

Peer Reviewed Sources:

Molecular Nutrition and Food Research, “Medication Induced Mitochondrial Damage and Disease

Toxicological Sciences, “Mitochondria as a Target of Environmental Toxicants

Molecular Interventions, “Mechanisms of Pathogenesis in Drug Hepatoxicity Putting the Stress on Mitochondria

Biochemical Society Transactions, “Mitochondrial Matirix Reactive Oxygen Species Production is Very Sensitive to Mild Uncoupling

Science Translational Medicine, “Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells

Cleveland Clinic Journal of Medicine, “Mitochondrial cytopathy in adults: What we know so far

Current Pharmaceutical Design, “Nitric Oxide-Derived Oxidants with a Focus on Peroxynitrite: Molecular Targets,Cellular Responses and Therapeutic Implications

Journal of Internal Medicine, “Chronic fatigue syndrome: assessment of increased oxidative stress and altered muscle excitability in response to incremental exercise

Biomed Central, “Central role of nitric oxide in the pathogenesis  of rheumatoid arthritis and systemic lupus erythematosus

JAMA Psychiatry, “Mitochondrial Dysfunction as a Neurobiological Subtype of Autism Spectrum Disorder

Expert Opinion on Therapeutic Targets, “The role of mitochondrial dysfunctions due to oxidative and nitrosative stress in the chronic pain or chronic fatigue syndromes and fibromyalgia patients: peripheral and central mechanisms as therapeutic targets?

***********************************************************

 

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Posts Written by Floxed Friends

Many of my floxed friends have blogs.  Links to their blogs can be found on the “Links and Resources” page of this site.  I thank them very much for telling their story and for their words of wisdom!  All of you are very much appreciated!

Some of my floxie friends have also submitted posts to web sites that are not devoted to fluoroquinolone issues.  I wanted to keep track of them, so I’m putting them in this post.  This post will be updated as posts are added.  If you want anything to be listed on here, please let me know through the “Contact” link.  Thanks!

Emily Dodson-Murphy, “How Many Doctors Does it Take to Fix a Shower?  A Tale of Fluoroquinolone Injury” on Hormones Matter

Emily Dodson-Murphy, “Becoming the Person I Hoped I was” on Hormones Matter

Debra Anderson, “Glabrata – A Deadly Post Fluoroquinolone Risk You’ve Never Heard About” on Hormones Matter

Patti Ireland, “The Doctor Said Not to Worry About Levaquin Warnings” on Hormones Matter

Bobbi Jo Stellato, “A Fragmented Balance: Life Post Cipro” on Hormones Matter

Janet Murray, “Fluoroquinolone Neuropathy Feels Like Acid Burning and Electricution” on Hormones Matter

Destini Bates, “A Long and Complicated History Topped by Levaquin: Please Help” on Hormones Matter 

Floxed, “Cipro Ain’t Sexy: Fluoroquinolones Tanked my Sex Drive” on Hormones Matter

Erin Wilson, “Fluoroquinolone Recovery Brought to you by Nature” on Natural News 

Erin Wilson, “Levaquin, Cipro, Fibromyalgia and Leaky Gut – The Missing Link” on Natural News 

Erin Wilson, “Levaquin and Cipro’s ‘Dirty Little Secret’ Sexual Dysfunction” on Natural News 

Erin Wilson, “Levaquin and Cipro – The Descent into Madness” on Natural News 

Erin Wilson, “NEW FDA WARNING for Cipro, Levaquin, Avelox – Permanent Peripheral Neuropathy – Mixed Emotions” on Natural News

Erin Wilson, “The Reality of Fluoroquinolones – Or, How I Became Disabled Over Night” on Natural News 

Erin Wilson, “Fluoroquinolone Toxicity for Dummies” on Natural News

Andrea, “Did I Get Floxed?” on MTHFR Living

Ruth Young, “In the Valley of the Shadow of Death” on Pictures of Cats

Sarah E. Flynn, Ph.D., “Postpartum Fluoroquinolone Toxicity” on Hormones Matter

I have many posts on Collective Evolution and Hormones Matter as well.  I thank Hormones Matter, Collective Evolution and Natural News for highlighting the dangers of fluoroquinolones!

Please let me know what needs to be added to this post.  Thanks!

 

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Cipro Stole my Libido

Hormones Matter Logo

Also known as, “Post Fluoroquinolone Sex and Libido.”

Here is the link – http://www.hormonesmatter.com/post-fluoroquinolone-sex-libido/

Loss of libido, and other sexual side-effects, are common for floxies.  Just one more thing these nasty drugs take away.  It’s not okay.

 

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Same Disease, Different Symptoms: It’s all in the Mitochondria

Hormones Matter Logo

Fluoroquinolone toxicity affects everyone differently. Why? Because that’s how mitochondrial dysfunction works. WHY? Because mitochondrial produced ROS influence gene expression and we all have different genes. WHAT? Yup, ROS affect gene expression. Perhaps we should be more careful with our mitochondria. After all, our genes are at stake.

Same Disease, Different Symptoms:  It’s all in the Mitochondria

 

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What’s Poisoning You?

The following post is a bit of a rant. It’s inflammatory and is likely to annoy or offend many of you. I apologize for the offense in advance.

Though, as you will see in the following post, I get annoyed when people look exclusively at diet when looking for causes of mysterious diseases, I don’t think that nutrition is unimportant. It is very important. Food is fuel for our bodies, and putting lousy fuel into our engines will lead us to feeling sick and looking sickly.

But fluoroquinolones, and other damaging pharmaceuticals, are like putting sand in the engine. They thoroughly mess up one’s body and mind – suddenly, severely and systemically. Yet the severe cellular damage done by fluoroquinolones is ignored by many physicians providing explanations to their patients as to why their body is going hay-wire. It annoys me to the point that I rant about it on the internet.

Blaming the Standard American Diet (SAD – very sad) for multi-symptom, chronic, mysterious diseases is far better than the alternative of telling people that their disease is all in their head. However, it’s not the full picture and it has problems as well (that I rant about below).

(Relevance of this below) – I totally think that Glenn Beck is floxed. Just sayin’.

What’s Poisoning You?

The American diet is difficult to defend. The typical American meal contains high-fructose corn syrup from genetically modified corn, sugar in amounts that are multiple times higher than those found in any fruit in nature, partially hydrogenated fats, MSG, preservative chemicals, pesticides, herbicides, antibiotics, etc. Additionally, the typical American meal is devoid of vegetables, sprouted grains, fermented foods, fiber, minerals, vitamins, nutrients, etc. This combination has, undoubtedly, contributed to all sorts of chronic diseases – from obesity to cancer.

However, I think that, collectively, we are taking the “what you eat determines your health” paradigm too far.

Blaming a poor diet for a person’s illness reeks of victim-blaming. It says to the person who is ill, you wouldn’t be sick if you ate differently. You wouldn’t be sick if you ate more vegetables, or fewer desserts, or more or less carbohydrates, or more or less protein, or more or less fat. In telling a person who is sick that he or she wouldn’t be sick if he or she had eaten differently, you are telling that person that it is his or her fault that he or she is sick.

Is that fair? And, more importantly, is it true?

Health is determined by many factors, not just diet. Genetics, of course, also play a role in health. Exercise, stress, time in the sun, social connections, etc. also contribute to health – and disease. Exposure to toxins also has a huge effect on health. Toxins in our environment – from pollution and from them being intentionally added to our food and water – affect our health – and being poisoned by them, either slowly or suddenly, can cause illness. Pharmaceuticals are also an under-recognized source of toxins that adversely affects the health of many (though it takes a paradigm shift to realize how much harm prescription drugs do because we all think that drugs should be helping us, not hurting us).

fluoroquinolone-lawsuit-banner-trulaw

The blaming of diet for diseases has gotten to a point of ridiculousness. In an article published in The Atlantic entitled Living Sick and Dying Young in Rich America, the author asks a doctor if the autoimmune disease that her husband (who is in his 30s) suffers from is the result of growing up eating Spaghetti-O’s and drinking Pepsi. In a round-about way, blaming addiction to junk food, the doctor confirms that her husband’s diet is the culprit. Really??? Does that really seem reasonable to anyone – that Spaghetti-O’s and Pepsi could cause an autoimmune disease? Because I’m pretty sure that autoimmune diseases are caused by malfunctioning immune system cells, and that the doctor should look at things that have been confirmed to damage immune system cells as potential culprits, before blaming Spaghetti-O’s. And yes, there are plenty of environmental toxins and pharmaceuticals that have been shown to adversely affect immune system cells (lymphocytes).*

On March 20, 2014, former Fox News personality Glenn Beck announced that his doctors had determined that the cause of his neuropathy, inflammation and pain was his diet. His doctor told him, “‘Well, basically, you are being poisoned… Food is poisoning you.’” Glenn Beck looks like a pretty typical American so I’m sure that his diet is not perfect. But I’m also pretty sure that he’s eating FOOD, not poison, and that his doctor is simply wrong in telling him that the neuropathic pain that he is experiencing is due to his food poisoning him. Poison, not food, poisons people. Perhaps Mr. Beck should look at what pharmaceutical poisons he has taken in lately – especially fluoroquinolones – because fluoroquinolones can do enough cellular damage to cause neuropathic pain – but Taco Bell burritos can’t.

I’m sure that Mr. Beck will adjust his diet by cutting out the foods that are perceived to be poison, and I truly hope that helps him. Most people who are suffering from diseases that cannot be cured by modern medicine adjust their diet to try to heal themselves. Many people who are struggling with chronic illness stick to a “perfect” diet. For some, “perfect” means the Paleo Diet. For others, “perfect” means the Specific Carbohydrate Diet. Some stick to a raw food diet. Some juice. Some avoid gluten, or sugar, or dairy, or meat, or all of those things. Yet, even with a “perfect” diet, they are still sick. They have not been magically cured by adding or subtracting some food source. They are sick – chronically ill – and though adjustments to diet may be helpful, they are not a cure for many (maybe most) people.

An even bigger problem with blaming diseases on diet than the victim blaming and nonsense explanations, is that the real explanation for the disease is not sought. Chef Boyardee, Taco Bell and Pepsi become the scapegoats and the real culprit behind the disease is ignored. Something is really causing autoimmune diseases, neuropathic pain, chronic fatigue, fibromyalgia, and all the other diseases that are striking young Americans. Blaming diet, and thus blaming the victim, may be convenient, but it is not the whole answer (or even part of the answer if you are feeling cynical). The real answers will remain elusive until we demand real, sensible answers to the question of what causes the chronic diseases of modernity.

Sure, a diet full of sugar, hydrogenated-fat and chemicals isn’t good for you, and it is surely contributing to many diseases, but does it really make sense to blame a poor diet on body-wide neuropathic pain, or on a person being so drained of energy that they feel like they have the flu and a bus hit them even after a full night’s sleep? It sure doesn’t make sense to me.

What does make sense to me is iatrogenic mitochondrial dysfunction. Many pharmaceuticals, including fluroquinolone antibiotics, statins, metformin (a diabetes drug), multiple chemotherapy drugs, and others, have been shown to damage mitochondria and lead to oxidative stress. Mitochondrial damage and oxidative stress can lead to multi-symptom chronic illnesses and neuropathic pain. (Source)

Perhaps diet isn’t solely to blame for many of the diseases of modernity. Perhaps pharmaceutical drugs – especially fluoroquinolones, and the medical system, share much of the responsibility for causing many of the chronic, mysterious diseases that plague people today.

It’s time for a paradigm shift. Moving away from victim blaming is a very good place to start.

* Here are some articles about how fluoroquinolones adversely effect lymphocytes (immune system cells) –

Nepal Medical College Journal, Genotoxic and cytotoxic effects of antibacterial drug, ciprofloxacin, on human lymphocytes in vitro”

Antimicrobial Agents and Chemotherapy, “Ciprofloxacin Induces an Immunomodulatory Stress Response in Human T Lymphocytes

 

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The Fluoroquinolone Time-Bomb – answers in the Mitochondria

Adverse reactions to fluoroquinolones are often delayed and people can tolerate a certain number of fluoroquinolones before they experience an adverse reaction. Delayed reactions and tolerance thresholds are perplexing mysteries until you take a look at mitochondrial dysfunction. Both delayed reactions and tolerance thresholds are actually typical for disease states that are caused by mitochondrial dysfunction. More details on the matter in this post. As always, thank you for reading and sharing!

http://www.hormonesmatter.com/fluoroquinolone-time-bomb-mitochondria-damage/

 

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I AM

Have you seen the documentary, “I AM?”  It’s an interesting and insightful film.  I recommend it.  Here it is, for you to check out:

The film makers seek to find answers to two questions.

1.  What is wrong with our world?

and

2.  What are the solutions to the world’s problems?

(Spoiler alert) – The answer to both questions is the same.  It is –

I AM.

I am what is wrong with the world.  I am the solution to the world’s problems.

Kinda profound, if I do say so myself.

We all have problems and solutions within us.  I assert that they are in balance as well.  Those who cause huge problems are a huge part of the solutions.  Those who cause small problems are still part of the solutions, but they’re a smaller part.  People fluctuate between perpetuating problems and perpetuating solutions.  The pendulum swings from problem to solution – in our individual lives, in our institutions and in our world.

No one is the solution without recognizing that they are the problem as well.  There are those who are the problem without being the solution, but they generally fail to recognize that they are part of the problem – they fail to see that there is a problem and imagine, out of ego and narcissism, that they are neutral.

It’s called responsibility.  I am responsible for the problems that I cause in the world and I am responsible for solutions to them.

It took a long time for me to accept responsibility for my floxing, and I sill like to think of myself as more of a contributor to the solution than to the problem of people being hurt by fluoroquinolones.  Sure, I can take responsibility for putting the pills in my mouth, for self-medicating, for having a breakdown when I got sick, for not communicating what happened to me to my doctor, for the anger that I feel toward the medical system, and plenty more.  Got it.  I am responsible for all of those things.  I am also responsible for creating this site to bring light to the problem, for offering people stories of hope and healing, along with snippets of “deep thoughts by Lisa” – these things are part of the solution.  They’re the least that I can do and I have every intention of doing more to change the situation of people becoming disabled from unnecessarily strong chemotherapy drugs being frivolously prescribed to treat infections.  My pendulum is in solution mode for the problem of fluoroquinolone toxicity.  And fluoroquinolone toxicity is a problem, a big one.

Doctors, and the medical system as a whole, don’t seem to see the problem though.  They are stuck in the narcissistic, false view that they are the solution without being part of the problem.  They fix things, cure diseases and heal people, right?  Sure – those things happen.  Doctors should be proud of every life that they save and every disease that they cure.  But those accomplishments do not diminish the pain that they inflict.  Along with the good that has come with modern medicine, harm has come as well.  The rise in “diseases of modernity” such as autoimmune diseases, obesity and its complications, ignored diseases (like fibromyalgia, chronic fatigue, gulf war syndrome, adverse drug reactions, etc.), autism, mental illness (it’s not a choice), dietary intolerances, etc. are at least partially, if not fully, caused by pharmaceuticals, doctors and the medical system.

It’s not that difficult of a concept – pharmaceuticals cause mitochondrial damage, those mitochondria create massive amounts of oxidative stress and the superoxide and/or peroxynitrate cycles within the cells cause direct and indirect (through damage to DNA and negative gene expression) harm.  Also, destruction of the microbiome and its balance are really bad ideas that cause all sorts of problems.

Of course, the whole process is complex and difficult to understand when you get into the details.  It’s too difficult for most doctors to see, not only because it’s hard and they’re too busy to look at scientific research, but also because they’re stuck in their ideas of what “should” be.  Drugs “should” metabolize out of a person’s body in a short amount of time.  Antibiotics “should” kill bacterial cells while leaving host cells intact.  Fluoroquinolones “should” not damage DNA.  Doctors “should” cure diseases.  The medical system “should” be the solution, not the problem.

Too bad what “should” be does not align with what IS.

Every doctor, every drug, even every patient that buys into the system, is part of the problem.

It is time for everyone to recognize that with the good of Western medicine, some bad has come too.  It’s time for egos to be put aside and for people (mainly the doctors) to realize that they are responsible for recognition and creation of the problem – they are the problem.

Doctors and other people in the medical system are the solution as well.  Of course they are!  Who else could be?  They have the resources to solve the problems that they cause, and no one else does.

Patients are part of both the problem and the solution as well.  The information is available for patients to realize a large amount of what good and harm drugs and procedures do.  Patients can, and should, advocate for themselves and speak out when they see something that is wrong.

But first, both doctors and patients have to see that there are problems.  They need to see that the situation that we are in, with young people falling ill to chronic, disabling diseases, is not okay.  It’s a problem.

I can only hope that doctors will be willing to put aside their foolish egos and realize that they do harm along with good.  They aren’t going to realize anything or accept any culpability without pressure.  I am sure of that.  People who have been hurt by them (and the system that they are part of) need to rise up and make them aware of the harm that they have caused; the problems that their actions have led to.

Patient activists are responsible for putting pressure on doctors, the pharmaceutical companies, pharmacists, and others in the medical field too.  We need to push harder so that those within the system are recognizing the problem and working toward becoming the solution.

I AM the solution.  (Along with cannabis – haven’t you heard?  It cures EVERYTHING.)

I AM the problem as well.  (Along with fluoroquinolones – seriously, I can connect them causally to every chronic illness out there.)

I have less power than the medical system and the pharmaceutical industry though, so, dare I say – I am less of the problem, or the solution than they are.

Solution mode is greatly needed.  From everyone.  Especially from those with power and influence.

Maybe my perceived lack of power is a cop-out though.  Maybe the answer is simple.  What is the problem?  I AM.  What is the solution?  I AM.

You are too.

“No man sets aside his old ways to seek the new until he personally feels the need for it.  This is why the great teachers urge men to see the awful condition they are actually in, rather than living by pretty words and nonexistent ideals.  Talking about love and peace when neither love nor peace are in their hearts is a cunning and destructive evasion of the facts.”  – Vernon Howard

 

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Fluoroquinolone Caused Mitochondrial Damage and Oxidative Stress – What are the Consequences for Floxies?

I’m working on a couple of posts/articles/essays right now about how all sorts of chronic diseases, from diabetes to alzheimer’s to autism, are caused by mitochondrial damage and oxidative stress.  I’m pointing out that pharmaceuticals cause mitochondrial damage and oxidative stress.  Of course, I’m focusing on my least-favorite pharmaceuticals, fluoroquinolones, and am trying to make a case that fluoroquinolones cause many chronic diseases.

That line of thinking is scary as hell for those of us who have had a bad reaction to a fluoroquinolone.

What does the connection between fluoroquinolone induced mitochondrial damage / oxidative stress and chronic diseases mean for us?  What is our prognosis?  Are we going to come down with diabetes or Alzheimer’s?  Are our kids going to be autistic?  Scary stuff – aaaarghhhh!!!  New plan – run and hide on a tropical island far from the internet.

Just so you all know, I’m not sure what it all means.  I am doing my best to put together the pieces of the puzzle.  I’m doing my best to draw conclusions from reputable sources.  I’m doing my best to understand what happened in my body when the Cipro bomb went off in me.  In trying to understand what happened, I’m stumbling upon articles that point to the possibility that the problem is bigger than we think.  It is possible that fluoroquinolones are causally related to fibromyalgia, chronic fatigue syndrome / M.E., all autoimmune diseases, depression, anxiety, bipolar disorder, diabetes, Alzheimer’s, autism, some kinds of cancer, and more.  Are all cases of those chronic diseases caused by fluoroquinolones?  Of course not – most of the diseases are older than fluoroquinolones.  But it’s possible that they have increased hand in hand with fluoroquinolone use because of the damage that fluoroquinolones do to mitochondria, and the oxidative stress that they induce.

It’s also possible that other drugs are the primary culprits.  And I suppose that it’s even possible that junk food that is full of free radical producting chemicals is the culprit behind all the oxidative stress that people who have chronic diseases experience.  Or maybe the problem is GMO corn or childhood vaccines or pesticides or something else.  There are pretty reputable sources that note that pharmaceuticals cause mitochondrial damage and oxidative stress though, so I’m betting that the culprits are Bayer, Johnson & Johnson, Merck, Pfizer, Abbvie and all the other pharmaceutical giants that are very good at making customers and very bad at actually promoting health.

Anyhow, the theory that fluoroquinolones cause mitochondrial damage / oxidative stress and that mito damage / oxidative stress are behind all sorts of chronic diseases is the theory that I’m going with.  Whether I’m right or wrong is yet to be seen.  Even though my theory may scare the crap out of you, your support is still greatly appreciated.  🙂

If I’m wrong, the case against fluoroquinolones is still pretty damning.  With fluoroquinolones, one can convert an acute problem, an infection, into a chronic syndrome that includes destruction of connective tissue (tendons, ligaments, cartilage, fascia, etc.) throughout the body, damage to the nervous systems (central, peripheral and autonomic), and more.  Fluoroquinolone toxicity can develop slowly or quickly.  It can last for months or years.  Tragically, some people don’t recover.  But most people do – with time.

How fluoroquinolones cause the damage that they do is hugely complex and difficult to understand.  Part of the damage mechanism is mitochondrial damage and oxidative stress, hence the trip down chronic disease lane.  Other aspects of how fluoroquinolones work – DNA adducts, RNA transcription errors, disruption of tubulin assembly, etc. are equally daunting and potentially harmful.  Ugh.  Bad news.

But people do recover from fluoroquinolone toxicity.  I did.  I’m fully recovered.  So are the other people who have shared their stories on www.floxiehope.com.  I wonder if the chronic disease prognosis for those who recover is any different from the prognosis for those who don’t, or for those who take fluoroquinolones but don’t have an adverse reaction.  I don’t think that a study to answer that question has been done.  It would be interesting to find out the answer.

Right now, we don’t know the answers though, so we have to make assumptions about our health and our future.  If you’re going to make baseless assumptions about your personal health prognosis though, they may as well be hopeful ones.  Try to believe that you will heal and that once you heal you will be as capable, resilient and durable as you were before a fluoroquinolone knocked you down.  Or, better yet, believe that floxing gave you some sort of health super-powers.  Here is a crazy thought – what if our floxing reaction was actually protective against damaged cells and the conversion of those cells into chronic diseases?  What if our horrible reaction was because of mass apoptosis (programmed cell death), and in dying, those cells kept from reproducing and leading to a chronic disease at some later time?  Now that is a far-fetched hypothesis, but I kind of like it.  I just hope that my recovery doesn’t mean that my bad cells are sticking around now.  :p

Back to fluoroquinolones being related to the chronic diseases – what if I’m right?  What if fluoroquinolone caused mitochondrial damage and oxidative stress is behind all of the chronic diseases of modernity?  Well, it’s a sad state of affairs.  But people should know about it.  They should hear about it.  They have the right to know.

But you are going to be fine.  Try to believe it.

 

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The Quinolone Vigilance Foundation (QVF)

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There is a non-profit, charitable foundation devoted to funding research and raising awareness about the dangers of fluoroquinolones and fluoroquinolone toxixity.  It is called The Quinolone Vigilance Foundation (the QVF) –  www.saferpills.org.

Following is some information about the QVF:

History and Purpose

The QVF was founded by 4 floxies in 2009. Their goals were to review the existing scientific literature that addressed adverse reactions to fluoroquinolones, recruit and network medical researchers, and stimulate new research into fluoroquinolone toxicity.  It became apparent that a national non-profit was necessary to establish the professional credibility of the QVF and so that the QVF could act as a vehicle to raise the funds needed to drive scientific research.  The QVF exists to stimulate and fund university-level peer-reviewed research that will inform the medical community about severe adverse reactions to quinolones/fluoroquinolones.

Since April, 2012, the QVF has been registered as a charitable organization, it has received its EIN from the IRS, registered with the State of New Jersey (where the QVF is headquartered), registered with the proper federal agencies, and written up and filed Articles of Incorporation.  In April 2013, the QVF filed for 501(c)(3) status with the Internal Revenue Service, where its status as of 01/29/14 is pending.  The QVF can operate as a non-profit while its 501(c)(3) status is pending.   It is anticipated that receipt of the QVF’s 501(c)(3) status will be received in 2014.

While the QVF does do advocacy, the main focus of the foundation is research.  When research contracts are entered into by the QVF, the QVF officers sign confidentiality agreements, which note that the research cannot be discussed publically.  For this reason, much of what the QVF does is behind closed doors.  The officers of the QVF ask for understanding among floxies in realizing that even though much of what goes on in the QVF cannot be public, much is going on.  Per Rachel Brummert, Executive Director for the QVF:

“My day includes talking to the medical community, soliciting other major universities to do studies, reaching out to other agencies, making phone calls and doing e-mails.  We give up our weekends, evenings, holidays, etc. to do our jobs, and we do not get paid for what we do.  In everything we do, we keep in mind that the floxie community relies on us, and we are passionate about what we do for that very reason.  We understand that it is frustrating that we cannot share more about what we do. We share that frustration, however, we do it to protect the community and the people we work closely with. Unfortunately, research is slow, and expensive. We are fully committed to doing what is necessary to fully fund the studies we initiate so that we can answer the questions of “why did this happen” and “how can we fix it”. The floxie community deserves those answers.”

As a research organization, QVF’s mission is to:

•    Network medical professionals and researchers regarding adverse reactions to quinolone antibiotics.

•    Foster, initiate, and direct fundamental research to discover underlying toxicity mechanisms.

•    Fund research that will produce the most promising results.

•    Translate new discoveries into effective medical practices and therapies to help alleviate individual suffering.

•    Develop and apply discovered knowledge to educate the medical community and inform best practices for public health.

 

Information about some of the research that the QVF is involved in can be found through the following links:

Rochester Study: http://www.saferpills.org/analysis-of-fluoroquinolone-toxicity-in-the-central-nervous-system-cns/

Dr. Mark Noble site: http://www.urmc.rochester.edu/people/23095977-mark-david-noble

UCSD Study: http://www.fqstudy.info/Fluoroquinolone_Effects_Study/Welcome.html

Dr. Beatrice A. Golomb’s C.V.: http://www.fqstudy.info/Fluoroquinolone_Effects_Study/About_Dr._Golomb.html

 

Advocacy and Outreach

Though the QVF is primarily focused on research, some advocacy and outreach activities have been conducted.

In November, 2012, the QVF partnered with another foundation to do a 5k walk/run, where awareness materials such as rack cards, wrist bands, awareness cards, etc. were distributed.

In November, 2013, Matt Sorrell, husband of QVF Treasurer Christina Mathos-Sorrell, ran the NYC marathon on behalf of the QVF.  Matt was able to raise money for the QVF and increase awareness about fluoroquinolone toxicity through running the marathon and collecting donations.

In December, 2013, The QVF did an online auction, put together by Executive Director Rachel Brummert and QVF fundraising director Michelle Fewer.

The QVF plans to hold the events listed above annually, and discussions are being conducted about other ways to raise funds.

TheQVF also sells merchandise.  The QVF store can be found at www.cafepress.com/quinvigil.

 

QVF Staff/Volunteers

The founders of QVF reached out to fellow victims of fluoroquinolone toxicity to establish a presence in the online community. The board of directors was created, and ambassadors/advocates from all over the world began volunteering to help. Currently, the QVF is an international organization represented in six countries: the United States, Canada, Ireland, the United Kingdom, Belgium, and Australia.

The current volunteer staff positions are as follows:

Board

Rachel Brummert – Executive Director and President of QVF

Matthew Arnold – Vice President

Alice Broussard – Corporate Secretary

Christina Manthos -Sorrell- Treasurer

Michelle Fewer – Fundraising Director

Dr. Deanna Minkler – General Board Member

 

Non-board

Donna Schutz- Ambassador Coordinator

Lisa Bloomquist – Communications Director

Lori Boz- Consultant

 

More information about the QVF can be found on www.saferpills.org.

 

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Don’t take Cipro, Levaquin or Avelox if….

Hormones Matter Logo

Post on Hormones Matter –

http://www.hormonesmatter.com/dont-take-cipro-levaquin-avelox-fluoroquinolone-toxicity/

In an ideal world, fluoroquinolones would be reserved for use in life-or-death situations. Until then, and until medicine can be completely customized and individualized, these groups of people should avoid fluoroquinolones:

1.  People who have reacted badly to a fluoroquinolone in the past.

2.  Athletes.

3.  People on steroids (corticosteroids).

4.  People who need to take NSAIDs regularly.

5.  Immunocompromised Individuals.

6.  People with Mitochondrial Dysfunction.

7.  Children.

 

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Forgetting the Pain of Floxing

Getting floxed was the most difficult thing that I have ever gone through.  Getting sick, and all of the struggles that went along with it, was difficult physically, mentally, emotionally and spiritually.  To have my body suddenly fall apart was scary.  To have my mind fall apart along with my body, was terrifying.  Getting floxed tore down parts of me that I thought were solid.  It took what I thought were my greatest strengths, my physical and mental capabilities, and made them my weaknesses.  I had to find strength in a part of myself that I previously didn’t know existed, my spirit, in order to make it through.  Through trial and error, perseverance, dumb luck, support and probably some other factors, I made it.  I have recovered.

Getting floxed was also the most traumatizing thing that I have ever experienced.  It took me longer to get through the PTSD and shock of getting sick/poisoned than it took me to get through the physical or mental deficiencies.  The emotional turmoil involved in getting poisoned by a perfectly legal, prescription antibiotic was, well, traumatizing.  But I think that I have recovered from the trauma as well.

As life has gone on, as it has returned to normal, as I have gained my capabilities back and gotten over the pain and shock, I have started to forget what it was like to be sick.  I have forgotten the pain.  I have forgotten the desperation.  I am forgetting the fear.  Even the anger is leaving me.

It’s odd to forget.  It’s odd to not remember a big chunk of my life (from December, 2011 through August-ish, 2013).  It’s odd that something that defined my life is leaving my consciousness.  It’s odd that I am forgetting what helped me and what hurt me.  It’s odd that I am even forgetting the trauma, because it isn’t traumatic for me anymore.  I have recovered and it’s just… gone.

It went away.  All of it.  Even the memories.

It’s perplexing to lose the memories of my floxing.  I feel like I need those memories in order to do what I do – write about fluoroquinolone toxicity, advocate for change in how fluoroquinolones are thought about and administered, empathize and offer advice to those who are struggling, etc.  But the memories are fading.  They’re leaving.

It’s healthy to forget, I’m sure.  I’m sure that it’s best for my mind, spirit and even body to forget the pain, suffering and fear.  It’s best to let it go.

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But it is odd to lose my memories.  Of course I don’t miss the pain, fear or anger.  But I’m a little worried that in losing my memories I will lose my passion, my drive and my purpose.  Advocating for change in the policies surrounding fluoroquinolones is important, and I intend to keep doing it.  As time goes on and my memories fade, I fear that I will lose focus and that I will forget my passion.

I wish you all healing.  I wish you all hope.  I wish you all forgetting.  May you forget the pain.  May you forget the sickness.  May you forget the fear.   May you forget the anger.

But I encourage you to not forget the fight.  It’s a good and worthy fight.  Though I may forget how it felt to go through getting floxed myself, I’ll try to remember that there is nothing that is okay about other people going through it.  I will keep in mind that people are suffering needlessly – and that’s wrong.  I will keep in mind that these drugs are being given to innocent children and that they are being hurt.  It’s horrifying and it needs to stop.  I’ll keep fighting.  And I’ll keep reminding myself about why I fight through listening to your stories.

As you recover, when you see that light at the end of the tunnel and you know that a full recovery is on the horizon, please write down your story and, if you want to share it, send it to me to publish on Floxie Hope.  If you don’t write it down, you will forget it.  That’s not an altogether bad thing, but other people can benefit from your wisdom if you write down your story while it’s still fresh in your mind.

Forgetting the pain and sickness is healthy.  May you get well enough to let your floxing be a distant, faded memory.  The fight is different from the sickness.  You can forget about the sickness while still remaining in the fight.  IMO – it’s excellent to do both.

 

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I’m a little overwhelmed – it’s okay (xoxoxo) – I just want to let you know

I’m feeling a little overwhelmed.

This isn’t an altogether bad thing.  I’m overwhelmed because so many people are reaching out to me to ask me questions about fluoroquinolones.  This is great – it means that word is getting out about the dangers of Cipro, Levaquin, Avelox and Floxin.  It means that people are reading what I write and connecting their pain and/or chronic illness to their prior use of fluoroquinolones.  Though it’s scary and infuriating for anyone to realize that they have been poisoned by a prescription antibiotic, knowledge is power and I’m pleased to be part of anyone putting together the pieces of their health puzzle, and realizing the cause of their pain and suffering.

There are a lot of you who I need to get back to.  There are multiple emails in my inbox that need responses.  You deserve a thoughtful response and I promise that I’ll get to you as soon as I can.  I’m trying to answer FQ related questions and emails, while also trying to keep my job, maintain my relationships and continue to write.  It’s hard to balance it all.  I’m not doing a very good job at finding a balance right now.  I’m overwhelmed.

My main goal in starting Floxie Hope was to help people through their Floxing experience.  Part of doing that is responding to people when they reach out to me.  I will get back to all of you.  I promise, I will.  I really am sorry for my less than timely responses.  If it has been more than a week and I haven’t responded to you, please re-send me your email – or just send me a note saying that you’re waiting for a response.

When I do respond to your emails, please keep in mind that I really don’t want people to think of me as an expert.  I’m doing my best to put the pieces together.  I’m doing my best to be right.  I’m doing my best to rely on credible research.  But I have been wrong about many things in my life and I don’t want people to take what I say as gospel.  I promise you, I am quite fallible.  (I’m right about fluoroquinolones being dangerous, over-used, ill-understood drugs – that is well established – but I may certainly be wrong about some details and some of my assertions.)  My perception that others are thinking of me as an expert is somewhat adding to me feeling overwhelmed.  It’s pressure.  It’s pressure that I brought on myself, but I do ask that you keep in mind that I’m just a Floxie who is trying to put together the pieces and I don’t know all the answers.

To all of the people who are helping me – THANK YOU!  Thank you to everyone who responds to comments on Floxie Hope.  Thank you to all of those who take time out of their busy schedules to support fellow Floxies on the facebook support groups.  Thank you to my family, friends, coworkers, allies and associates for your support.  You are all appreciated!

I encourage all of you with fluoroquinolone related questions to join a facebook support group.  There are lots of friendly people in the groups who can answer your questions and help you out.  Here are a few of them:

Fluoroquinolone Toxicity Group:  https://www.facebook.com/groups/floxies/

Fluoroquinolone Poisoning Group: https://www.facebook.com/groups/616904631689613/

Surviving Antibiotic Adverse Reactions: Avelox, Cipro, Levaquin, Floxin:  https://www.facebook.com/groups/261231253984443/

That’s enough for this post.  I need to get to some emails.  Or work.

Thank you all for your patience!

All my best,

Lisa

Thank you for reading Floxie Hope!  I hope that all who read Floxie Hope gain insight, support, understanding and, most of all, HOPE.  If you would like to support Floxie Hope, all contributions will be greatly appreciated!  Click HERE to contribute to Floxie Hope.  Thank you!

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A Return to Hope

I’ve been doing a lot of research into the mechanisms of action for fluoroquinolones lately.  I’ve been passing what I’ve learned on Floxie Hope.  Unfortunately, much of what I’ve learned hasn’t fallen into the “hopeful” category.  Most of what I’ve learned has been pretty grim.  Fluroquinolones deplete DNA, damage mitochondria, stimulate lymphocytes (immune system cells) deplete irreplaceable enzymes and produce neurotoxins.  Bummer, huh?

In a weird, twisted way, I get excited about these discoveries.  They’re the nails that are going to seal the coffin on these drugs, and maybe even Bayer and Johnson & Johnson.  I imagine these facts bursting into common consciousness with an expose in Time, Scientific American or The New Yorker.  I get excited about being right, about being at the forefront of this problem, about being able to tell people, “I told you so” when they realize that quinolone toxicity is a huge problem that is adversely affecting the lives of millions of people.  Irrefutably showing the danger of these drugs is key to getting their use curbed, to stopping the atrocity of people being maimed by prescription antibiotics.  It’s also the key to justice – once the damage pathway for these drugs is shown, those who have been hurt by them can get compensated for their pain and suffering.

My ego gets wrapped up in fantasies of taking down Bayer and J&J.  I have grandiose notions of saving the world from these nasty, evil drugs that are maiming and killing innocent people.  I want people to connect the dots, to see what I see; that fluoroquinolone toxicity is connected with all autoimmune diseases, Fibromyalgia, Chronic Fatigue Syndrome, Allergies, Dietary Intolerances, Depression and Anxiety, Insomnia, Gulf War Syndrome and even Autism Spectrum Disorders.  I want to be validated by recognition.  I want the world to change.

In wanting validation and change in the world, I have lost track of the purpose of this blog.  The purpose of this blog is not to save the world.  It is not to bring down Bayer or Johnson & Johnson.  It is not to be right.  The purpose of this blog is to give hope for healing to those adversely affected by fluoroquinolone antibiotics.  It is FloxieHOPE.com, not FloxiesDestroyBayer.com.

I apologize for scaring you guys.  I apologize for pointing out the cellular damage that these drugs inflict.  I don’t think that the damage done is irreparable.  I think that most people heal from Fluoroquinolone Toxicity.  I think that most people move on to live full, happy, healthy lives.  I think that DNA is constantly patching and repairing itself.  I think that the body is constantly fighting to neutralize toxins and that even if our enzymes aren’t replaceable, we have enough of them to function or else we’d be dead.  I think that there is hope.  I think that there is healing.

That is why I created this web site.  To let people know that healing is possible.  To tell stories of healing so that those who are scared can realize that there is a light at the end of the tunnel, that they should have hope because this too shall pass.

So I’m sorry for highlighting scary information.  I’m sorry that the focus of many of these posts has been freak-out material, not hopeful, healing material.  I really want you all to be hopeful.  I want you to heal and hope is healing.  It is, I promise.

I can’t promise to be 100% hopeful 100% of the time.  I think that bringing research about the adverse effects of these drugs to the fore is important.  I think that it’s important to try to change the world and to try to stop these drugs from being prescribed inappropriately.  I’ll just promise to try to remember that this site is about supporting people through a difficult time, letting them know that things do get better with time and letting them know that hope is necessary and that healing is possible.

I’m not a Scientist.  I’m not a Chemist or a Toxicologist or a Geneticist.  I’m actually quite annoyed that people with these titles aren’t putting together the implications of these various studies and shouting about them, and thus there is a void.  I’m trying to fill that void by connecting the dots to the best of my abilities, but analyzing these studies is not my area of expertise.  My area of expertise is healing from FQ toxicity.  It’s my area of expertise because it’s what I have done.  I can personally testify that healing is possible because I have healed.  So have the other people who have shared their stories on FloxieHope.com.  We have been scared, we have been hurt and we have healed.  Healing is possible.  It is possible for you too.  Have hope.

 

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Saving the Life of a Floxie

I think that it’s really important to have someone who saves your life early in your Floxing.

Everyone’s Floxing/Fluoroquinolone Toxicity is different.  Some people start having aches and pains after taking a fluoroquinolone and those aches and pains gradually build over time as their tendons get weaker and weaker, their cartilage thins and their nerves get more exposed.  The people with gradual onsets of fluoroquinolone toxicity problems are probably unlikely to realize that the causes of their issues are the antibiotics that they took at some point in the past.  They are more likely to attribute their pain to aging, Fibromyalgia, arthritis, etc.  Other people’s fluoroquinolone toxicity comes on suddenly.  They go from being healthy and active, to being suddenly unable to walk, sleep, think or do any of the activities that they enjoyed just weeks earlier.  Those people tend to freak out – as is a reasonable thing to do when, without warning, everything in your body is going hay-wire.  All Floxies deserve help as they go down the path of being poisoned, and recovering.  Those with a sudden onset of physical and mental health issues very much need help as they go, suddenly, from being healthy and active to barely able to move.

Fluoroquinolone Toxicity is frightening to experience.  To go from being able to easily run 5 miles to barely being able to walk, is scary.  To have pain that travels throughout your body, for no apparent reason, is scary.  To lose your memory, your ability to connect with other people, your ability to read, your ability to sleep, your sanity, etc. is scary.  All of those things happening at once, is TERRIFYING.  Add the fact that excessive fearfulness is a CNS related symptom of fluoroquinolone toxicity, and you get some people who really, really, desperately need help to make it through.

We need people to save our lives.  Perhaps that sounds dramatic.  Perhaps it is.  But it certainly doesn’t feel overly dramatic when you are going through having a bomb go off in your body.

Most people go to their doctor first.  I’m sure that there are plenty of Floxies who have been helped, and saved, by their doctors.  But generally, there is not a lot that Western Medicine can do to help people going through Fluoroquinolone Toxicity, so MDs are left to either turn away patients with FQ toxicity, or misdiagnose them.  The rejection that Floxies face from their doctors, the people that they go to first to help them, to fix them, is painful.  Not only is everything going wrong in their body and mind, but there is no solution that can be offered by the people who gave them the poison that hurt them.  (The promise of every pharmaceutical ad ever seen on TV of, “see your doctor immediately if ____ occurs,” is broken.)  It’s heartbreaking.  Sometimes the heartbreak of the disappointment is compounded by doctors being hostile or disrespectful to the Floxie, accusing him or her of having mental problems or of being a conspiracy theorist.  I won’t forgive those doctors who make sick people feel worse by blaming them for their illness.  However, I actually feel sorry for many doctors in the situation of not knowing how to heal or fix a Floxie.  They have no tools with which they can fix the mess that their drugs made.  They have little knowledge of the effects of these drugs, much less the mechanism by which they operate – they only know that they kill bacteria and that they typically don’t immediately kill people.  They have little time and a lot of pressure.  The Western Medical System is not set up for doctors to save lives (with the exception of emergency medicine), or to heal people.  It is set up for doctors to “fix” ailments by throwing drugs at people, and both patients and doctors suffer as a result.

When doctors aren’t able to provide help, help is sought elsewhere.  And when it is found, it is a God-send.  We truly NEED our lives to be saved.  We need someone to prop us up, to let us know that we will be okay, that we can make it, that life isn’t over – in a way that we can hear, in a way that we can know and truly believe.

My Acupuncturist saved my life.  The needles that he put in me didn’t save my life, though I think they helped.  The herbs that he gave me didn’t save my life, though I felt better because of them.  HE saved my life.  He treated me when others weren’t able to.  He gave me a diagnosis.  He treated every new symptom that popped up, they popped up daily for a while, and he saw me as often as necessary.  He stopped the downward spiral that my body was intent on for a while.  He stabilized my physical, mental and emotional health.  He made me realize that healing was possible.  He never downplayed a symptom and he always believed me, but he would still tell me when I was being silly, wrongheaded or self-destructive.  When I lost my memory and reading comprehension and asked him, “What if I’m stupid now?” he responded, “But you’re not,” and it meant the world to me.  Because I trusted him.  He knew how to treat my body, mind and spirit.  He knew what to say and he knew what to do.  He is a healer and he was able to help me to heal.  I am eternally grateful to him.

Other people are saved by their Chiropractor or Naturopath or other Alternative Medicine provider.  Fortunately, Alternative Medicine is more set up for healing, and listening to patients, than Western Medicine, and help with healing can be found within those systems.

Other people have their life saved by a family member who recognizes the crisis that his/her loved one is in, and drops everything to help them.

Other people have had their lives saved by strangers.  They reach out, in a crisis, to people over the internet, and sometimes a guardian angel comes through and helps them, saying whatever needs to be said to let the panicked Floxie know that she/he will be okay, that she/he will make it, that the crisis will pass.

Life-saving help can come from anywhere.  It can come from a person who you know well or it can come from a person who you’ve never said a word to.  It can come from a doctor’s office or a church or a Facebook group.  It’s there though.  You might have to look for it.  You might have to ask for it, but it is there – and most people are happy to help if they can.

Those people who help Floxies through the toughest times, are so, so, so important, and I am grateful for every single person who has understood, who has helped, who has guided and who, somehow, maybe even without them realizing it, has saved a life.

Thank you.

 

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QVF Auction 2013

Starting on Monday December 2, 2013, the Quinolone Vigilance Foundation (QVF) is holding an online auction to help raise money for research into why Fluoroquinolone Toxicity happens, and how to help treat and cure it. More information about FQ Toxicity, and the research that is being conducted can be found at www.saferpills.org.

The online auction will be held on Facebook. Please join the auction through this link – https://www.facebook.com/events/405080019624946/?ref_dashboard_filter=upcoming&source=1 If that doesn’t work, please search for “Quinolone Vigilance Foundation Auction 2013” on Facebook. If that doesn’t work, please send me a message and I’ll invite you (my email address is lisa.bloomquist@yahoo.com but I prefer to receive messages through facebook.)

Items such as handmade jewelry, non-handmade jewelry, designer Coach bags, antique books, regular books, a handmade scarf, tee-shirts that were sent from Australia, posters, flower arrangements, etc. will be auctioned off.

To bid on the items, please follow these steps:

  1. Join the auction’s facebook site
  2. Write in an amount that you want to bid on an item – in the comments section below the item (auction items will be posted on the event site starting on Monday December 2, 2013. Each item will remain up for approximately 48 hours.)
  3. Pay for your items. You can pay either through the QVF web site – http://www.saferpills.org/donate-2/ or through paypal to Donations@saferpills.org.
  4. Someone from the QVF will contact you to get your address and your items will be sent to you shortly thereafter.

Please share this event with your friends and family. The QVF has a great assortment of contributions that will be auctioned off. With Christmas/Hanukkah/Festivus coming, this is a great way to support an important cause while shopping for your loved ones.

Thank you very much!  

 

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Happy Thanksgiving!

Happy Thanksgiving!

I hope that all of you have a wonderful Thanksgiving!  I hope that it is filled with love, laughter, good food, family, friends, joy, etc.  I hope that pain, sickness, anxiety, etc. are not at the forefront of your mind.  I hope that, despite the trials, tribulations, pain and suffering, you have things that you are grateful for and that you can focus your energy on those things, no matter how small they may be.

This Thanksgiving, I am thankful for the following:

  1. My health.  This is the first Thanksgiving since I got Floxed that I am as healthy as I was before I got Floxed.  I was okay a year ago, but I wasn’t 100% yet.  I’m 100% healed now.  It feels good.  I am immensely grateful for my healthy body and mind.  I will never take my health for granted again.
  2. My family.  I am lucky that I have a wonderfully supportive family.  They have always loved me, I have always loved them, and I am incredibly grateful for them.
  3. My friends.  I have gained some wonderful friendships over the last year.  A lot of those friendships have been with fellow Floxies who I only know through the internet.  Even though those friendships aren’t in-person connections, they’re still valuable.  I enjoy the camaraderie that I have with fellow Floxies.  I appreciate that there is a community of people who understand and support each other through the difficult journey of being Floxed.
    1. I am thankful that each of my Floxie friends is making it.  You guys are survivors.  Just putting one foot in front of the other is difficult for many of you, I know.  But I’m glad that you do it.  I’m thankful that you keep going, keep trying and keep fighting.
    2. I’m grateful for my non-Floxie friends too.  Your love, laughter, support and caring mean the world to me.
  4. FloxieHope.  I’m thankful for the success of this blog.  I don’t know how blog success is measured in blogger universe, but in my world, reaching as many people as I’ve reached since starting FloxieHope in June, 2013 is amazing.  I’m thankful that I have a platform through which I can reach out to people, share information with them, and let them know that they are not alone and that they will survive.
    1. I am thankful for all of the people who have written their recovery stories for FloxieHope.  THANK YOU and CONGRATULATIONS on your recovery!
    2. I am thankful for Chandler Marrs of www.hormonesmatter.com  for publishing some of my essays about fluoroquinolones on Hormones Matter.
    3. I am thankful for Arjun Walia of www.collective-evolution.com for publishing some of my essays about fluoroquinolones on Collective Evolution.
    4. I am thankful for everyone who reads FloxieHope.  Thanks.  🙂
  5. I am thankful for the journey.  All of it.  Even the crappy parts that were unpleasant at the time, I’m as grateful for them as I am for the good things.  Without any of it, I wouldn’t be where I am now.  I’d like to think that I’m doing alright now, so I’m thankful for everything that has led me to this moment.

Of course, I’m grateful for a million other things.  One thing that meditation has taught me is that I can find beauty and gratitude in the smallest things, even in the pleasure of the breath.  Those little things that I’m thankful for are too numerous to list.  Please know that I am thankful for them though.

I truly hope that you have a wonderful Thanksgiving!

Xoxoxo

-Lisa

 

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Truth Seeker or Conspiracy Theorist? You Decide.

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The disbelief that we face when telling people about our reaction to FQs is frustrating beyond belief. People assume that we’re wrong, or lying, or crazy conspiracy theorists when we tell them that an antibiotic caused our body to go completely hay-wire. We’re not wrong, crazy, lying, etc. The human body is just exceedingly complex and, unfortunately, poorly understood, and the effects of fluoroquinolones on our body are devastating. Here is an essay that I wrote about the topic of being thought of as a conspiracy theorist for shouting about the dangers of FQs. As always, shares are greatly appreciated. Thanks so much for reading it!

Truth Seeker or Conspiracy Theorist, You Decide

 

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How Pharmaceuticals Came to be the 4th Leading Cause of Death in America

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Post on Collective-Evolution –

http://www.collective-evolution.com/2013/11/20/how-pharmaceuticals-came-to-be-the-4th-leading-cause-of-death-in-america/

Real Farmacy published it as well –

http://www.realfarmacy.com/how-pharmaceuticals-came-to-be-the-4th-leading-cause-of-death-in-america/

Don’t go down the path described.  It’s not a pretty picture.

 

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Seeing through the Matrix

Do you remember that scene in The Matrix where Neo (Keanu Reeves) is offered the pills by Morpheus (Laurence Fishburne)?  He has the choice, he can take the red pill and see the real world, or he can take the blue pill and remain in the façade world, the Matrix.  He takes the red pill and he breaks out of the fantasy façade world and enters the real world – a place of destruction and suffering.

I took the red pill.  I actually took 14 red pills.  I’m not sure which one triggered the reaction in my system that changed my perspective entirely, but I see the world differently now, as a result of being floxed.  It would be horribly narcissistic for me to say that I see the “real” world now and that few others do, and I don’t mean that.  What I mean is that I see the world differently now than I did before, and that there are some things that I believe to be true that never even occurred to me before.  I broke out of my own personal Matrix, with those pills; those 14 fateful, life-altering pills.

This perspective shift is not unique to me, or to being floxed.  Whenever people experience a betrayal, whenever something that they assume is safe and protective turns out not to be, their perspective changes and they see the world differently.  Usually this is a bad thing.  People become jaded and bitter, assuming that they are going to get hurt again because they got hurt in the past.  I would like to think that this hasn’t happened to me.  I’m still pretty trusting.  But I do see things differently.  I’ll let you judge for yourself if these things that I now believe are jaded and bitter or if they reflect the “real” world.

I now see:

  • No one is looking out for patients.  The FDA isn’t (duh).  Doctors, Pharmacists and the other people directly involved in the medical system aren’t.  The legal system isn’t.  No one is.  The medical system doesn’t get to be the 4th leading cause of death of Americans by having the proper checks and balances that focus on patient safety and protection.  (Of course, there are plenty of individuals who are looking out for the best interest of patients, but the system, as a whole, is not.)
  • Much of medicine relies on magic, not science.  Officially, the mechanism by which fluoroquinolones cause tendon, CNS, kidney, liver, etc. damage is unknown. (source 1)  Scientists and doctors state, most of them truthfully, that they have no idea how these drugs mess people up.  It is also claimed that much is unknown about the way these drugs work to kill bacteria – the thing that they are supposed to do.  If the mechanism by which a drug works, and sometimes doesn’t work, is unknown, the reliance is on magic and faith to get the desired outcome, not science.  Doctors claim that their pills and potions are backed up by science, but they’re not.  They’re backed up by faith in a broken system.  BTW – the mechanism by which fluoroquinolones both kill bacteria and damage every cell in a person’s body is by forming a poisonous adduct to DNA.  This was found, then immediately ignored, in 1998.  Here’s the article – http://www.jbc.org/content/273/42/27668.full (source 2)
  • Doctor’s rely on anecdotal evidence all the time, but patients aren’t allowed to.
  • No matter how many peer-reviewed, scientific journal articles show the danger of a drug, doctors will believe that the scientific evidence supports its use until it is removed from the market.  Similarly, no matter how sick a drug makes people, it won’t be taken off the market unless…. I’m not sure…. Because flat-out causing cancer isn’t enough to get Humira (source 3) and Enbrel (source 4) removed from the market.  Perhaps damaging the DNA of humans will be enough to get fluoroquinolones removed from the market (read source 1 and 2), but I doubt that it will be.
  • Fluoroquinolone damage is everywhere.  A large portion of the people who are diagnosed with autoimmune diseases, fibromyalgia, chronic fatigue syndrome, leaky gut syndrome, anxiety, depression, dementia, arthritis etc. are actually suffering from fluoroquinolone toxicity.  (Of course, those diseases are real on their own, and there are many factors that cause them, but fluoroquinolone toxicity is one of the causes that isn’t even considered.)
  • If enough people repeat a mantra enough times, it will be seen as true, no matter what the evidence against it.  It almost makes me laugh, reading articles that point out the damage that fluoroquinolones can do to mammalian cells that follow that presentation of damning evidence with the conclusion that they “have an excellent safety record.”  (source 5)

I could go on, but I’ll leave it at that.

I have largely healed from getting floxed.  I fluctuate between 95-100% of my pre-floxing capacity.  Life has continued.  As I live my normal life, and feel fine while doing so, the memories from being sick fade.  Sickness is no longer my reality.  It is no longer shaping my day-to-day life.  It is no longer warping my perspective and shattering my trust in the medical system.  Normalcy has resumed and the trivial has, again, taken over.  It would be easy for me to go back into the Matrix, the façade world where I don’t understand how “mysterious” ailments occur, and to think that the systems that are in place to protect and sustain us are working as they should.  Undoubtedly, it would be healthier for me to leave my “Floxie” world behind and to go back to what everyone else considers to be the real world.  As a healthy person, I can do that if I choose to.

But I’m choosing not to.  I’m choosing to stay in the “Floxie” world.  I am choosing the version of reality, of truth, that I had when I was sick.  It may not be the healthiest thing in the world for me to do, but it feels like the right thing to do.  People are sickened by these drugs every day.  Their world is shaken to the core when their health, their pain-free, happy, trusting existence is brutally stolen from them.  It seems like the right thing for me to do to continue to see their pain, to acknowledge their struggles, and to fight the broken systems that are perpetuating the sickening of innocent people.  It feels right to stay in the dark and gloomy “real” world and fight the Agent Smith’s of the world who want to keep us trapped and sick.  So I will continue to do so.  The Matrix, with its niceties wrapped in naiveté, is enticing, but I prefer to know the truth.

Sources:

  1.  Sarah H. Elsea, Neil OsheroffST, and John L. Nitissll,  Cytotoxicity of Quinolones toward Eukaryotic Cells: IDENTIFICATION OF TOPOISOMERASE II AS THE PRIMARY CELLULAR TARGET FOR THE QUINOLONE CP-115,953 IN YEAST* Vol. 267, No. 19, Issue of July 5, pp. 13150-13153, 1992 THE JOURNAL OF BIOLOGICAL CHEMISTRY 0 1992 bv The American Societv for Biochemistrv and Molecular Bioloev. Inc. Printed inn.’S.A.  http://www.jbc.org/content/267/19/13150.full.pdf+html
  2. Arkady B. Khodursky and Nicholas R. Cozzarelli, The Mechanism of Inhibition of Topoisomerase IV by Quinolone Antibacterials*  10.1074/jbc.273.42.27668 October 16, 1998 The Journal of Biological Chemistry, 273, 27668-27677.  http://www.jbc.org/content/273/42/27668.full
  3. FDA warning label for Humira – http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/125057s232lbl.pdf
  4. FDA warning label for Enbrel – http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/103795s5507lbl.pdf
  5. Stahlmann R., “Safety profile of the quinolones,” Journal of  Antimicrobial Chemotherapy. 1990 Nov;26 Suppl D:31-44. http://www.ncbi.nlm.nih.gov/pubmed/2286589

 

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Lessons Learned from Getting Floxed

1980-08 #15 - Version 2

I’m going to start this post with a disclaimer – when I say I “asked for” this, I don’t mean that I deserved to get sick.  It is not my fault that I got sick.  I have made plenty of mistakes in my life, and plenty of the mistakes that I’ve made have to do with taking those Cipro pills.  But still, the bomb that went off in my body as a result of taking Cipro was not my fault.  Those of you who are sick from fluoroquinolones or other Rx drugs, it is not your fault.  The disproportionately horrifying adverse reaction that you are going through makes any responsibility that you have in creating the problem miniscule in comparison to the responsibility of those who are at fault.  There are people who are to blame for your illness, but you are not one of them.  You are a victim.  So, when I say that I “asked for” the things that have come into my life after getting Floxed, I mean those words literally – I asked for them.

I’ve always wanted:

  1. Purpose
  2. Direction
  3. Passion
  4. Righteousness
  5. Something to say that was important/interesting
  6. To be heard/validated
  7. A spiritual outlet
  8. An identity
  9. To be a fighter – to be strong
  10. To lose 10 pounds

I asked for those things.  I sent those desires out into the universe in whatever form I sent them – vague thoughts, wishes, desires, prayers, etc.  If you had asked me at any point in my adult life if I wanted any of those things, I would have said yes.  There would have been no hesitation.  Without a doubt, I wanted each of those things to come into my life.  I didn’t have a plan of action for how I was going to obtain any of them, other than the most trivial of them – to lose 10 pounds – I always had a theory on how to do that.  I wanted all of the more important things too, but I had no idea how to get them.

I vaguely looked for purpose, direction, passion, righteousness and an identity through my education and career choices.  I got a Masters in Public Administration with the hope of finding a way to make the world a better place through public policy.  I had every intention of finding my purpose and passion through my Master’s program but when the program ended it was a struggle to pick a topic for my thesis because I hadn’t discovered anything that I really cared about.

I work for a non-profit.  The non-profit that is my employer does good work in the community by lending money to developers of affordable housing.  I like that I do something that is generally helpful, but I don’t feel passionate about what I do.  I admire the people who feel passionately about their careers and their lives.  I wished to live like them, to have something that got me riled up, something that I really cared about, something that made a difference in the world and that made me someone important.

I never thought that I was particularly tough or strong.  I have always been strong physically, but emotionally and mentally, I was sensitive and (I hate to admit it) weak.  I would sacrifice myself so that others could win, or not feel bad.  I needed validation and was torn down easily.  I never had much will-power, thus the fairly constant unfulfilled wish to lose ten pounds.

Despite not having passion, direction, etc. my life wasn’t bad.  In fact, it was quite good.  I had my health.  I had a family and friends who loved me immensely.  I had enough money (everyone wants more, of course, but I had enough to get by).  I had a job.  I owned a home.  Life was good, it just didn’t have the “oomph” that I wanted it to.  I wanted more “oomph” and, over time, never specifically consciously, I wished for the things listed above.  I wanted them.  I asked for them.

I got all of those things.  I survived getting poisoned by Cipro and in doing so I learned that I’m not only a survivor, I’m a fighter.  I gained passion, direction, righteousness, etc. through screaming that it is NOT OKAY for people to be poisoned by prescription antibiotics.  I found that I have something to say and a surprising number of people are listening to me.  I found spiritual outlets (you can read about that here http://www.collective-evolution.com/2013/09/14/a-journey-through-pharmaceutical-induced-illness/) and I found my soul.  I found my purpose.

I got exactly what I wanted.  Through getting sick.  Through recovering.  Through Cipro.  Out of all the things in the world, fucking Cipro, brought me those gifts.

I asked for them.  I asked and I received.  They just didn’t come in the packaging that I was looking for.

It’s kind of funny, isn’t it?  In a shoot-me, horrifying kind of way, it’s funny.  Be careful what you ask for, because you just might get it.

There are some other things that I gained from getting sick.  If I had been a more wise person, I probably would have wished for them ahead of time.  They are:

  1. Empathy
  2. Compassion
  3. Patience
  4. Tolerance

I gained those things from being knocked down, from being sick.  When I was healthy, I didn’t even realize that I was lacking those things for those who are not healthy.  I now see the world in a way that enables me to have empathy, compassion, patience and tolerance for those who are struggling and sick.  In gaining those things, I have become a better person.

To wonder if it was the right thing, to wonder if my health and longevity should have been sacrificed so that I can have a purposeful and passionate life, is futile.  That choice, if it was a choice, was not made on a conscious level.  I certainly know that I will never sign up to get poisoned again and that I will do everything in my power to keep others from going through what I went through.  But the experience of getting sick, the experience of recovering, and now the experience of fighting, have made me a better person.  It’s good to be empathetic, compassionate, patient, tolerant, passionate, determined, righteous and even skinny*.  These are not bad cards to be dealt.

* Do NOT even think about taking a fluoroquinolone for weight loss.  I could list the ways that that’s a stupid idea, but I’ll just leave it at – don’t be an idiot.

 

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Email to the FDA

For the record, this email was sent to stephen.king@fda.hhs.gov on 10/11/2013.

Dear Mr. King,
When is it going to be recognized that fluoroquinolones are dangerous enough to severely restrict their use?  How many people have to suffer from permanent disability before their use is restricted to life-or-death situations in which there is no safer alternative treatment?
I thank you and the FDA for finally, after 30 years of complaints, updating the warning label for fluoroquinolones to include the risk of permanent peripheral neuropathy.  As someone who was severely adversely effected by Cipro in 2011, at the age of 32, who had extreme pain in my hands and feet, though I probably didn’t categorize them as “peripheral neuropathy” because I didn’t know the term until recently so my report to the FDA didn’t include that symptom, I found the label update to be somewhat vindicating.  However, it does not go near far enough.
Please consider the following:
  1. This article in Nature (http://www.nature.com/nature/journal/v501/n7465/full/nature12504.html) links topoisomerase inhibitors to the expression of Autism related genes.  As I’m sure you know, fluoroquinolones are topoisomerase inhibitors.
  2. Fluoroquinolones adduct to bacterial DNA, as described in this article – http://www.jbc.org/content/273/42/27668.full.  Please see the attached note from a retired toxicologist who was severely adversely effected by a fluoroquinolone, for a description of how fluoroquinolones adversely effect human DNA.  These drugs adduct to DNA, just like Agent Orange, and they are given out like candy.
  3. Recent media articles about how people have suffered severe CNS damage after being in the ICU.  Fluoroquinolones are utilized commonly in the ICU.  Perhaps it would behoove you to make the connection between the NEJM article noting that people stop being able to think after a visit to the ICU and the severe CNS effects of fluoroquinolones.  https://www.google.com/#q=nejm+patient+in+intensive+care+lose+memory  Also, Lynn Spalding, the patient who was being treated for a urinary tract infection whose body was found in the hospital stairwell was more than likely given fluoroquinolones to treat her UTI.  A severe adverse reaction could have caused the events that led to her death – http://www.cnn.com/2013/10/09/justice/body-in-hospital-stairwell/
  4. Please read the comments under the NYT article about the dangers of fluoroquinolones.  http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/?_r=1  NONE of these people are lying or exaggerating.  In fact, many have reactions that are more severe than they describe because it is quite difficult to verbalize your problems when EVERYTHING is going wrong in your body and mind.
If you have any desire to read my story, it can be found at www.floxiehope.com.  I have recovered, but my recovery does not make the fact that I was hurt (possibly on a DNA level) justified.  My urinary tract infection could have, and should have, been treated with a milder antibiotic.
The FDA is supposed to be protecting and informing patients.  Please move in that direction.
Please feel free to contact me if you have any questions or concerns.
Thank you,
Lisa Bloomquist
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Fluoroquinolones 101

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I wrote the following article for Hormones Matter:

http://www.hormonesmatter.com/fluoroquinolones-101-antibiotics-to-avoid/

Thanks for reading it!

-Lisa

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Adverse Reactions to Fluoroquinolone Antibiotics and Gardasil

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I wrote an article for another web site, Hormones Matter about what Gardasil and Fluoroquinolones have in common.  Here’s the article –

http://www.hormonesmatter.com/fluoroquinolone-antibiotics-gardasil/

Here are some tragic stories of how young women have been hurt by Gardasil –

http://www.hormonesmatter.com/life-of-alexis-wolf-post-gardasil/

http://www.hormonesmatter.com/five-years-after-gardasil/

http://www.hormonesmatter.com/before-and-after-gardasil/

http://www.hormonesmatter.com/day-in-the-life-post-gardasil/

These stories matter.  These young women deserve to be heard.  Please read their stories with an open mind and heart.

Thank you.

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Fixing Fluoroquinolone Toxicity is IMPORTANT!

Your health is important.  Fight for it.  Because it matters.

Your voice is important.  Scream for justice.  Because it matters.

Your life is important.  Live life like it’s important.  Because it is.

Showing others that their life matters is important.  Because it does.

Doing something, anything, and I’m honestly not sure what direction to go, about the problems associated with fluoroquinolones, is IMPORTANT.  It’s not okay that any of us were hurt by a prescription antibiotic.  There is nothing okay about that.  We are not collateral damage, we are not small numbers (of people) (of people is in parentheses because it barely matters to some – we’re numbers ) who are adversely effected by an otherwise good drug – we’re PEOPLE whose lives matter.  And it’s important that we scream and let the people and the system that is disregarding us know that WE MATTER!  It’s important for us to change the medical (and maybe the American, and maybe the world) culture that views it as okay to treat people as if they don’t matter, as if they’re collateral damage.  It’s really important.

There are children, even babies, who are given fluoroquinolones – typically in the form of ear and eye drops to treat ear infections and pink-eye.  It is our biological and moral imperative to protect our children.  And by our children, I don’t just mean our biological children, I mean all children.  IT IS REALLY IMPORTANT THAT WE PROTECT CHILDREN FROM THESE DRUGS!  The knowledge that fluoroquinolones are contraindicated in the pediatric population is as easy to access as a Wikipedia article, yet kids, innocent babies that are depending on us to protect them, are being given these drugs because their doctors are not heeding the warnings.  We MUST protect the children.  We must.  Because it’s really, really, really IMPORTANT.

In prescribing a fluoroquinolone in a situation that was not life threatening, and where other, safer drug alternatives were available, our doctors disregarded their Hippocratic Oath.  THE HIPPOCRATIC OATH IS IMPORTANT.  We need to scream at our doctors, nurses, pharmacists, etc. until they start following their Hippocratic Oath again.  It’s the moral basis of our medical system, or at least it should be, and it’s really, really important.

Another basis of our medical system that has been lost is INFORMED CONSENT.  It’s also quite important.  When drugs have dangerous, and sometimes permanent, side effects, as is the case with fluoroquinolones, it’s really, really important that informed consent be obtained before the drug is prescribed.  This rarely happens.  Patients are prescribed what they assume is a benign antibiotic.  They probably don’t even think about the side effects.  It’s an antibiotic, people take antibiotics all the time.  How could an antibiotic be harmful?  The sheet listing the side effects is included in the baggie when the prescription is filled, but the pharmacist doesn’t take the time to go over the side effects.  No one ever says, “This can damage your CENTRAL NERVOUS SYSTEM” or “This may permanently weaken all of the connective tissues in your body to the point where you become bed-ridden” or any number of warnings that can describe the horror of fluoroquinolone toxicity.  It is really important that a protocol be established when prescribing and filling prescriptions for fluoroquinolones.  All gatekeepers, at all steps in the process, should be informing patients of the possible consequences of taking these drugs.  To not obtain real informed consent is WRONG.

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It is important for side effects to be relevant.  It is important that doctors, nurses, pharmacists and especially patients know the RISKS associated with every drug.  Everyone involved in the system, including the patients, are guilty of disregarding warnings of side-effects.  Warnings are disregarded because they’re seen as arbitrary and unimportant.  They’re seen as arbitrary and unimportant because the FDA puts one-size-fits-all rules around what is said on drug packaging instead of adequately communicating REAL RISKS of each and every drug to doctors and patients alike.  If warnings are seen as arbitrary, if they’re not seen as real, they will not be heeded and people will get hurt.  It’s important that proper information be given to patients and that they know the risks associated with every drug that we put into our body.

The system let us down.  It’s important that we try to fix it so that it doesn’t let other people down.

Sometimes I wonder if fighting Bayer and Johnson & Johnson is possible.  I know that it is the right thing for me to do, but I get tired.  Fear takes over.  I wonder if I’m getting stuck in the past and stuck in a time in my life when I was sick, when I’m largely recovered, and that’s not a healthy thing to do.  Winning is borderline unimaginable.  Bayer and Johnson & Johnson are huge, powerful and have resources beyond my comprehension.  But then I think, who am I not to fight?  Not that many people see that there are some REALLY BIG PROBLEMS in the medical system, but I do, because of what I’ve been through, so I should take this (unwanted) gift of insight and use it – to scream.  Injustice is being done, people are being hurt and the system needs to be fixed.  So I will scream.  I will find a way to scream.  This blog is a start (maybe it’ll go viral – you never know (yes, that means share this post)), but bigger, better, louder ways of screaming are possible and I will do my best to find them.  BECAUSE BABIES ARE BEING POISONED.  Until they stop giving Cipro ear drops to 1-year-olds, I will scream – because it’s IMPORTANT to keep babies from being poisoned.  The fact that that needs to be said means that we live in a crazy world.  Let’s try to make it a little more sane.

 

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Adverse Reactions to Fluoroquinolones are Like Earthquakes

I first wrote this essay about 4 months post-floxing.  My perspective has changed a bit since I wrote it, but a lot of it still rings true –

I’ve come to think of bad fluoroquinalone reactions like earthquakes.  They’re both scary, the world as you know it shakes and destruction and tragedy can occur.  Like earthquakes, they also vary in severity.  Some are minor, like the August 23,2011 earthquake in Washington D.C. that caused little damage to infrastructure and no fatalities – but you can certainly be sure that it was scary to those who lived through it.  Some are major and devastating, like the January 12, 2010 earthquake in Haiti that left hundreds of thousands dead and destroyed billions of dollars of infrastructure.

Most of the stories that you read about on the internet about horrific fluoroquinalone interactions are Haiti-like in intensity.  Lives have been ruined by fluoroquinalones.  People are unable to walk, work, sleep, etc.  Some are in constant pain.  My heart goes out to those people.  Through no fault of their own, their life was shaken to its core, and, in many cases, their world came tumbling down around them.  I certainly don’t want to take anything away from them or the tragedy of their situation by mentioning that there are others out there who have more minor, D.C.-like, reactions.  However, I do want those who are new to researching fluoriquinalone toxicity on the internet and scared for their life that a more minor, non-devastating, reactions are possible.  I know that I needed to hear that when I first got sick.

You might be okay in a couple of months.  You might not.  I hope and pray that you are one of the people who recovers quickly and completely.  Know that it is possible and have hope.

I was lucky enough to have a D.C.-like reaction.  (June 2013 revision – I wrote this before I recognized a lot of my mental issues and before I went through some cycles of feeling pretty lousy.  I now think that I had a reaction that is more like the 1989 San Francisco earthquake.  Still scary, but San Fran has recovered, as have I.)  I don’t know that I’ll ever reach 100% of my pre-fluoroquinalone poisoning capacity.  I have lost some abilities that I may never gain back (my memory, flexibility, balance and immune system reactivity aren’t what they used to be), but I can deal with the level that I am at now.  I can still work, walk, interact with my loved ones, etc.  It is possible that fluoroquinalone toxicity did some damage to my system that I’m not seeing right now.  It’s possible that there’s a fissure in my infrastructure and that my world may come tumbling down around me at some later time as a result of the earthquake that was my bad reaction to fluoroquinalones.  I hope not, but it is possible.  Each day is better than the last though, so, at this point, I have no reason to think that I won’t be fully recovered 6-12 months after my initial reaction.  I hope so.

June, 2013 addition –

For those of you who have been shaken, whose world has been rocked and who are facing the rubble, now you have the chance to rebuild.  It is a chance – an opportunity.  You never asked to be knocked down and you certainly didn’t deserve it.  But since the earthquake happened, you can view the opportunity to rebuild as a gift.  You can make yourself amazing.  You can build skyscrapers and bridges and arches – you can shine and scream and let your greatness be known.  You can build a tiny little house in a meadow, ’cause you didn’t need all that crap in the first place.  You can build a safe house in the suburbs, where your family will be protected, ’cause you’ll never let an earthquake knock them down.  You can rebuild yourself to be awesome, and beautiful, because you are.

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