Tag Archives: Avelox

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

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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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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).

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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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Your Mighty Mitochondria

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Fun facts – Nalidixic acid, the chemical compound that is the base of all fluoroquinolones, was discovered in 1962. Mitochondrial DNA was discovered in 1967 (by Lynn Margulis who happened to be married to Carl Sagan). So, if you are under the impression that naladixic acid was tested for its affects on mitochondrial DNA, you would be wrong. Information regarding how mitochondria affect gene expression is being uncovered… um… now-ish. So, in the 30+ years that fluoroquinolones have been pushed, they have been used by the human population with zero knowledge of how they affect gene expression (both mitochondrial and nuclear). Gene expression, as you might imagine, is important.

More information can be found in this post, “Your Mighty Mitochondria” published on Hormones Matter:

http://www.hormonesmatter.com/mighty-mitochondria/

 

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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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Article Breakdown – “Mechanisms of Pathogenesis in Drug Hepatotoxicity Putting the Stress on Mitochondria”

Do you have a headache?  Do you want one?  If so, read this article –

Mechanisms of Pathogenesis in Drug Hepatotoxicity Putting the Stress on Mitochondria” written by

Dean P. Jones, John J. Lemasters, Derick Han, Urs A. Boelsterli, Neil Kaplowitz

If you want a headache that lasts a while, read these articles that give background information as to why what is in “Mechanisms of Pathogenesis in Drug Hepatotoxicity Putting the Stress on Mitochondria” is important.

Drug Metabolism and Disposition, “Acyl Glucuronidation of Fluoroquinolone Antibiotics by the UDP-Gulucuronosyltransferase 1A Subfamily in Human Liver Microsomes

and

Current Drug Metabolism, “Acyl Glucuronides: Mechanistic Role in Drug Toxicity?

Despite their headache inducing capabilities, the articles are actually quite interesting and important.  To highlight how and why they are important, here is my breakdown of “Mechanisms of Pathogenesis in Drug Hepatotoxicity Putting the Stress on Mitochondria.”  As I have done with other journal articles, I have taken quotes from the article and commented under them.

“Mitochondrial impairment is usually a final event common to pathways leading to necrotic and apoptotic cell death.”

Since mitochondrial impairment leads to cell death, perhaps it would be nice for the FDA to examine how pharmaceuticals affect mitochondria before approving them.  Sadly, they don’t think so, as “mitochondrial toxicity testing is still not required by the US FDA for drug approval.” (http://psychrights.org/Research/Digest/NLPs/DrugsCauseMitochondrialDamage.pdf)

“it is important to consider whether drug-induced participation of mitochondria in hepatocellular death is a direct result of drugs acting on these organelles (e.g., drug accumulation, inhibition of electron transport and fatty acid oxidation, or depletion of anti-oxidant defense) or an indirect result ensuing from mitochondrial participation in programs of cell death.”

They found that both were the case.  This stuff is very complex and not linear.  One reaction causes another reaction, on and on for a while.  It’s not an either/or situation.

“Oxidative stress is often defined as an imbalance of pro-oxidants and antioxidants; however, the finding that thiols [i.e., glutathione (GSH) and cysteine (Cys)] in plasma are not in redox equilibrium with their disulfide products [i.e., respectively, GSSG and CySS] (1, 2) and that their plasma concentrations are substantially displaced from cellular values (3) has significantly altered concepts of oxidative stress (4, 5). For example, the in vivo “balance” of pro-oxidants and antioxidants cannot be defined by any single entity, such as an equilibrium constant, and our growing knowledge of signaling mechanisms indicates that oxidative stress may be better defined as a disruption of redox signaling, rather than as an imbalance of pro-oxidants and antioxidants. The failure of large-scale, double-blind interventional trials with free-radical scavenging antioxidants may likewise reflect an oversimplified therapeutic approach.”

If you have too many oxidants/oxidative stress in your system, you should just add antioxidants to restore the balance of oxidants and antioxidants, right?  Well, it’s not that simple.  Once the signaling mechanisms within mitochondria start the process of oxidative stress and apoptosis (programmed cell death), you can’t stop the process or repair the damage by adding more antioxidants to the mix.  If it was as simple as a disruption in the balance between oxidants and antioxidants, we would all be cured by glutathione drips and vitamin C supplements.  Unfortunately, there are complex feedback loops that make the process much more difficult to fix than that.  I’m not saying that glutathione drips and vitamin C supplements aren’t worth a try, it’s just that adding antioxidants to make up for the excess of oxidative stress (in the form of Reactive Oxygen Species and Reactive Nitrogen Species) is an oversimplified approach.

“Cells that overexpress the mitochondrion-specific thioredoxin Trx2, however, have been found to be resistant to tBH-induced loss of mitochondrial membrane potential and apoptosis”

Mitochondrion-specific thioredoxin Trx2 (http://en.wikipedia.org/wiki/Thioredoxin) is protective.  I’m not sure exactly what the implications of this are, but I suspect that those of us who got “floxed” have low levels of mitochondrion-specific thioredoxin Trx2.  (We probably are deficient in cellular magnesium and have a genetic predisposition toward susceptibility to mitochondrial injury and oxidative stress too.)

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“Mitochondrial Trx2 responds to changes in the extracellular redox potential of Cys/CySS (http://en.wikipedia.org/wiki/Cysteine) (EhCys/CySS) over a range that is relevant to cardiovascular disease in humans.” and “Previous in vitro findings support a cause–effect relationship for plasma CySS in cell signaling pathways associated with cardiovascular disease.”

Cardiovascular disease is related to mitochondrial function and oxidative stress / antioxidants.

Every chronic disease that plagues humans has its roots in mitochondrial dysfunction.  That may be Lisa’s theory, or it may be the truth.  TBD.  But there are enough journal articles noting how mitochondria relate to all sorts of chronic diseases that you’d think that our regulatory agencies would require that the effects of pharmaceuticals on mitochondria be tested before they are released to the market.  But no, they don’t.  They’re incompetent fools.  And because of their foolishness the pharmaceutical companies really have gotten away with creating customers, not cures.

“Mass spectrometry-based redox proteomics show that several classes of plasma membrane and cytoskeletal proteins involved in inflammation respond to this redox switch (Trx2), including vascular cell adhesion molecule, integrins, actin, and several Ras family GTPases.”

This really cryptic, difficult to understand sentence may actually say a lot about FQ toxicity.  The Trx2 redox switch (http://en.wikipedia.org/wiki/Thioredoxin) is protective against loss of mitochondrial membrane potential and apoptosis (see above).  So, perhaps underexpression of the Trx2 redox switch  leads to inflammation of  vascular cell adhesion molecules, integrins, actin, and several Ras family GTPases.  What are these things, you ask?  Wiki will tell us!

Vascular Cell Adhesion Moleculeshttp://en.wikipedia.org/wiki/VCAM-1 – “The VCAM-1 protein mediates the adhesion of lymphocytes, monocytes, eosinophils, and basophils to vascular endothelium. It also functions in leukocyte-endothelial cell signal transduction, and it may play a role in the development of atherosclerosis and rheumatoid arthritis.” (I’ll let you look up all of the words you don’t know in this – ugh.)

Integrins http://en.wikipedia.org/wiki/Integrin and http://www.cs.stedwards.edu/chem/Chemistry/CHEM43/CHEM43/CellAdhesion/integrinfunction.htm – “Integrins are cell-surface receptors that mediate cell-cell adhesion and are of great importance in binding and interactions of cells with components of the extracellular matrix (ECM) such as fibronectin (and cell-matrix). Importantly, integrins facilitate “communication” between the cytoskeleton and extracellular matrix, allowing each to influence the orientation and structure of the other.”  When your integrins are messed up, your cytoskeleton can get messed up.  Or something like that.

Here is an about how fluoroquinolones that mentions how they relate to integrins –

http://intl-vet.sagepub.com/content/38/2/143.full – “Lack of extracellular Mg2+ impairs the function of integrins.  These transmembrane proteins connect the cells to extracellular matrix”  This stuff has something to do with how fluoroquinolones mess up tendons.  Yeah.

Actinhttp://en.wikipedia.org/wiki/Actin  It’s important for cellular function.  (That’s all I’ve got for you – read the wiki :p )

Ras Family GTPases – http://en.wikipedia.org/wiki/GTPase  It’s important for cellular function.  (That’s all I’ve got for you – read the wiki :p )

You could get completely lost looking up all of the different systems described within this sentence.  Now that I have dug through it, maybe the authors of the study stated things as succinctly as possible.  This stuff is hard.

If someone significantly smarter than me wants to figure out how each of these cellular functions relate to magnesium, and, of course, floxing, that would be great.

Chelatable Iron, Oxidative Stress, and Cell Death

This whole section is about how iron relates to drug induced liver injury (DILI).  I’m not going to go over it piece by piece.  One thing that makes me curious about this section is that iron helped me to feel better than any other supplement.  I wonder why that is.  If the answer is in the article, I don’t understand chemistry well enough to get it from the article.

“In the mitochondrial permeability transition (MPT), high-conductance permeability transition (PT) pores open that make the mitochondrial inner membrane nonselectively permeable to all solutes of molecular mass up to approximately 1500 Da (59, 60). Calcium ion, oxidative stress, and numerous reactive chemicals induce onset of the MPT, whereas cyclosporin A (CsA) and pH less than 7 inhibit pore opening. After MPT onset, mitochondrial depolarize and undergo large-amplitude swelling driven by colloid osmotic forces, which are the hallmarks of the MPT. Swelling leads to rupture of the mitochondrial outer membrane and release of proapoptotic cytochrome c and other factors from the intermembrane space.”

Calcium + oxidative stress = apoptosis.  I’ve seen this elsewhere – https://floxiehope.com/2013/12/17/article-breakdown-mitochondrial-reactive-oxygen-species-control-t-cell-activation-by-regulating-il-2-and-il-4-expression-mechanism-of-ciprofloxacin-mediated-immunosuppression/

Interplay of Signal Transduction and Mitochondria in the Acetaminophen model

This section goes over how acetaminophen causes mitochondrial damage and drug induced liver injury.  It’s not a one-step process – it’s really complex and multiple things have to go wrong, at a cellular level, at once.  But it can happen.

As I mentioned above, I hypothesize that pharmaceutical induced mitochondrial injury is the cause of most chronic diseases.  Per Dr. Richard Boles, an expert in mitochondrial dysfunction and diseases:

these are partial defects. Mitochondrial dysfunction doesn’t really cause anything, what it does is predisposes towards seemingly everything. It’s one of many risk factors in multifactorial disease. It can predispose towards epilepsy, chronic fatigue, and even autism, but it doesn’t do it alone. It does it in combination with other factors, which is why in a family with a single mutation going through the family, everyone in the family is affected in a different way. Because it predisposes for disease throughout the entire system.”  (http://www.hormonesmatter.com/cyclic-vomiting-syndrome-mitochondrial-dysfunction/)

Is acetaminophen causing mitochondrial damage???  Is it damaging or depleting mtDNA?  Is that damage hereditary????  Because if ACETAMINOPHEN is leading to a variety of chronic diseases, ugh, well, we might just be fucked (sorry, I couldn’t think of another word for the situation).

Fluoroquinolones deplete mitochondrial DNA content – “Interestingly, as an inhibitor of bacterial topoisomerase II and an inducer of DNA double-strand breaks, ciprofloxacin was also shown to deplete the mitochondrial DNA (mtDNA) content, thus leading to mitochondrial dysfunction and retarded cellular growth (15–17).” http://www.jimmunol.org/content/184/9/4827.full.pdf  Awesome, huh?

I think that fluoroquinolone induced mitochondrial damage, both direct and hereditary, is responsible for the increase in every chronic disease that has increased in prevalence along with fluoroquinolone use.

“One of the most striking and puzzling clinical hallmarks of idiosyncratic (host-dependent) DILI is the delayed onset of the disease. In fact, the time between initiation of daily drug treatment and the presentation of biochemical markers and clinical symptoms of liver injury can vary from a few weeks to several months, sometimes even exceeding a year (89). The reason for the long lag, often followed by an abrupt progression to DILI, is currently not known. However, it is clear, for the vast majority of drugs, that the delayed time to onset is not related to a gradual accumulation (of drug or drug metabolite) that would eventually lead to critical and toxicologically relevant concentrations in the liver. Instead, the lag time could be explained by an accumulating effect of a drug. This notion, together with experimental findings, is in line with the concept that mitochondria are involved in the etiology of DILI, because damage to mitochondria often reflects successive chemical insults, such that no immediate cause for functional changes or pathological alterations can be established. There is indeed experimental evidence that prolonged injury to mitochondria, such as that which typifies oxidative injury to mitochondrial DNA or to components of the electron transport chain (ETC), has to cross a certain threshold (or a number of thresholds) before cell damage or cell death becomes manifest (Figure 4A).”

Underlining added by Lisa.  This paragraph explains both delayed reactions and the fact that most people have a tolerance threshold for fluoroquinolones.  If your doctor, or anyone else, tells you that your reaction that came months after you stopped administration of a fluoroquinolone “couldn’t have happened because of the FQ, because it was metabolized already,” or something like that, tell him or her to read this paragraph as many times as it takes to understand it.  Damage to mitochondria, whether related to DILI or not, is not linear and it is not (necessarily) immediate.  Unfortunately, this is not understood by anyone other than the authors of this study, and probably a few other scientists, so suing based on a delayed reaction to a drug that you have tolerated well in the past is difficult to impossible.

“This non-linear response can be explained upon consideration that the molecules that subserve mitochondrial function (e.g., mitochondrial DNA, mRNA, and ETC proteins) are present in excess of amounts required for normal cell function. This reserve (or buffering) capacity acts as a protective mechanism; however, at a certain stage of damage, the supply of biomolecules needed to support wild-type mitochondrial function becomes compromised.”

For each of us Floxies, the reserve capacity of our mtDNA has been depleted.  I have no clue if it can be built up again or not.

“a number of human mitochondrial genetic diseases that are clinically discreet are being diagnosed at unexpected rates”

It is REALLY IMPORTANT that it be determined whether or not pharmaceutical induced damage to mitochondria is hereditary.  Seriously scientists – important stuff – answers will be greatly appreciated.

“First, all the investigated drugs (including trovafloxacin, a fluoroquinolone) invariably decreased the activity of key mitochondrial proteins that are sensitive to oxidant stress (e.g., aconitase-2, complex I) and often decreased the expression of mitochondrial (but not nuclear) genes (120). Second, we found that these markers of mitochondrial injury became apparent only after four weeks, although a number of cytoprotective pathways were activated within two weeks. It thus appears that an initial adaptive response was followed by a toxic response (121), possibly also involving a threshold.”

What happens when expression of mitochondrial genes are decreased?  What are the implications of this finding?

The fact that there is an initial adaptative response followed by a toxic response (to pharmaceutical induced mitochondrial injury) may explain why there are so many different results to studies of fluoroquinolones (and other mito damaging drugs).  Long-term studies need to be done.  Studies that take into consideration that delayed reactions occur, need to be done.  Studies that take into consideration tolerance thresholds need to be done.  Please.

“First, superoxide that escapes dismutation to hydrogen peroxide cannot cross the inner mitochondrial membrane and can oxidize [Fe-S]-containing enzymes (e.g., aconitase and complex I/III subunits). Alternatively, superoxide can rapidly react with mitochondrial nitric oxide (NO) to form peroxynitrite (ONOO−). For example, the fluoroquinolone antibiotic trovafloxacin (TVX), a typical DILI-associated drug, raises steady-state levels of NO in hepatocellular mitochondria (unpublished data). The mechanisms are not known, but TVX also increases cytosolic (non-ferritin-bound) Ca2+, likely activating the Ca2+-dependent mitochondrial NO synthase (123) to produce ONOO−. Peroxynitrite is dangerous for a number of reasons: i) under acidic conditions, it can be degraded to form the extremely reactive hydroxyl radical; ii) it may directly cause the nitration of aconitase, Sod2, and the [Fe-S]-containing subunits of ETC complexes; and iii) it can induce mitochondrial permeabilization (Figure 4B) (124). This superimposed oxidative/nitrative stress could ultimately push the cell across the threshold to observable injury.”

Floxies – that’s what happened to you (and me).  It’s really hard to understand, I know.  I have a headache right now and I’m guessing that you do too if you’ve gotten this far in the post.  It’s important information though.

On a light note, I think that it’s funny that fluoroquinolones convert “NO” into “ONOO” in our cells.  Yup, that’s about what it feels like – “no” turning into “oh no” turning into “oh fuck” which turns into “fuck you Bayer / Johnson & Johnson.”  🙂

The end of the article and my comments.

Dean P. Jones, John J. Lemasters, Derick Han, Urs A. Boelsterli and Neil Kaplowitz are brilliant.  I thank them very much for this article.  It answers a lot of questions.  It still leaves many unanswered, of course – as any good article does.  I hope that they, and more scientists, are doing more work on the relationship between pharmaceutical induced mitochondrial injury and disease states.
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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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Conflicting Study Results: Do DNA Breaks Hold Answers?

There is a lot of conflicting information about fluoroquinolone antibiotics (Cipro, Levaquin, Avelox, Floxin and a few others) noted in scientific journals.  One study will conclude one thing about how fluoroquinolones effect human cells and another study will reach the opposite conclusion.  It’s frustrating for everyone involved and it leads to the conclusion, that is also noted in most journal articles about fluoroquinolones, that, “Despite their widespread application, the exact mechanism of action of the quinolones is not fully understood.” (1)  Despite the fact that the exact mechanism of action of fluoroquinolones is unknown, shouldn’t some of the details of their effects on human cells be known?  Shouldn’t there be some clarity in how these drugs affect cells, if not how they work or sometimes don’t work?  Basic, verifiable, answers are sought, but they remain elusive.  Some interesting, and possibly useful, information may be found in examining why clear answers are so difficult to obtain.

Shouldn’t it be testable whether fluoroquinolones increase or decrease levels of Reactive Oxygen Species (ROS)?  Shouldn’t the question of whether fluoroquinolones increase or decrease cellular inflammation be verifiable?  Shouldn’t Scientists know whether fluoroquinolones activate or inhibit t-cell gene expression?  These things can be studied in laboratories.  Answering these questions doesn’t require long-term studies, surveys that are subject to interpretation or vague definitions.  They should be answerable questions and the answers should be clear.  It’s science, not philosophy.  The answers should be black or white, yes or no, not shades of grey.

Yet with each of these questions there are multiple conflicting reports.  No one seems to be able to consistently verify what happens to human cells when they are exposed to fluoroquinolones.  Some studies done by well-run institutions and published in reputable journals say that fluoroquinolones decrease ROS, reduce inflammation and inhibit t-cell gene expression (2).  Other articles in equally well-respected journals say the opposite (3, 4, 5, 6).  So which is true?  Does the arrow go up or down?  I’m sure that answering these questions isn’t easy, but they should be answerable and the answers should be the same each time an experiment is done, right?

So why are there differing answers?  Why can’t Scientists, many of whom are undoubtedly brilliant and capable, figure this out?  A couple of possible answers are that one group of Scientists’ methods are wrong, or that cells react differently to fluoroquinolones with each exposure.  Both possibilities are fascinating on some level.  If the methodologies of one group of Scientists produce an anti-inflammatory response within cells, but the methodologies of another group of Scientists produce an inflammatory response within cells, perhaps the difference in methodologies holds the key to limiting an inflammatory response in living humans.  A cure, or an antidote to the inflammation that is definitely experienced by some people having an adverse reaction to fluoroquinolones, may be revealed from the study methodologies in which an anti-inflammatory response was induced/observed.

An even more interesting possibility is that how cells react to fluoroquinolones depends on which strand of DNA the quinolone molecules attach to.  Studies have found that fluoroquinolones form a poisonous adduct to DNA (7, 8).  Perhaps the reaction of the cell in response to exposure to fluoroquinolones depends on which DNA strands are broken, where they’re broken and where the quinolone molecule attaches to the DNA.  It is plausible that there are some places where DNA could be broken and adducted to that would create an inflammatory response and there are other places where DNA could be broken and adducted to that would create an anti-inflammatory response.  I have neither the tools nor the expertise to test this hypothesis, but from the perspective of someone who has been studying adverse reactions to fluoroquinolones for the past 2 years, the notion that fluoroquinolones break and attach to DNA makes sense of many perplexing aspects about fluoroquinolone toxicity.  If we assume that DNA breaks and quinolone adduction to DNA is behind adverse reactions to fluoroquinolones, the following questions may have the following answers:

Why are some people adversely affected by fluoroquinolones while others aren’t?  Potential answer – some people have important strands of DNA affected while other people have unimportant strands of DNA affected.  And/Or, some people have DNA affected that triggers and inflammatory response and the over-production of ROS, while others don’t because their DNA is broken in less consequential spots.

Why could I handle Cipro for 3 prescriptions but the 4th prescription hurt me?  Potential answer – the Cipro affected inconsequential strands of DNA the first 3 times it was administered, but it damaged an important strand of DNA the 4th time it was administered.

Why did I experience a delayed adverse reaction to Levaquin?  Potential answer – it takes time for damaged DNA to replicate.

Why can’t anyone seem to figure out how these drugs work?  Potential answer – because the human genome is not fully mapped out and most Researchers aren’t looking at how fluoroquinolones affect DNA.

I’m not a Scientist.  I certainly could be wrong about the above hypothesis.  But I do find it both frustrating and interesting that Scientists, who are undoubtedly smarter than I am, can’t seem to figure out some basic facts about how fluoroquinolones work.  I think that there are some answers in their inability to find clear answers.  I suspect that the answers lie in quinolone adducts to DNA.  Perhaps someone with the tools to determine whether I’m right or wrong will design an experiment (that is consistently verifiable) to determine the effects of fluoroquinolones on DNA, and to determine whether or not DNA damage results in differing effects of the drugs.

Sources:

  1. Inorganic Chemistry, “New uses for old drugs: attempts to convert quinolone antibacterials into potential anticancer agents containing ruthenium.
  2. The Journal of Immunology, “Mitochondrial Reactive Oxygen Species Control T Cell Activation by Regulating IL-2 and IL-4 Expression:  Mechanism of Ciprofloxacin Mediated Immunosuppression
  3. The Tohoku Journal of Experimental Medicine, “Fluoroquinolone Induced Tendinopathy: Etiology and Preventative Measures
  4. Nepal Medical College Journal, “Genotoxic and cytotoxic effects of antibacterial drug, ciprofloxacin, on human lymphocytes in vitro”
  5. Journal of Young Pharmacists, “Oxidative Stress Induced by Fluoroquinolones on Treatment for Complicated Urinary Tract Infections in Indian Patients
  6. Science Translational Medicine, “Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells
  7. The Journal of Biological Chemistry, “The Mechanism of Inhibition of Topoisomerase IV by Quinolone Antibacterials.”
  8. Proceedings of the National Academy of Sciences of the United States, Biochemistry, “Quinolone Binding to DNA Mediated by Magnesium Ions”

 

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Doctor Referral List

Several people have asked me for referrals to doctors who specialize in Fluoroquinolone Toxicity.  Unfortunately, there are very few doctors who claim any expertise in Fluoroquinolone Toxicity (I say claim because even the most in-depth medical journals say that the mechanisms through which fluoroquinolones work, and sometimes don’t work, are unknown at this time).  But there are doctors who have read-up on fluoroquinolone toxicity, who are familiar with the issues of Floxies, who are willing and able to listen and to help, when possible.  Here is a list of the doctors who have been identified thus far –

 

https://docs.google.com/spreadsheets/d/10HdvKMTV1YGPyubf9KCYivtG8i2jo8w1kZjBDjNdt38/edit#gid=7

 

If you find a good doctor that you like who you would like to refer other Floxies to, please add the doctor, or other medical professional that helps you, to the referral list –

 

https://docs.google.com/forms/d/e/1FAIpQLSeSLS4uxb4P8g05Jo7MomnuLle9qGaIPValUL22v-AKwuXy6Q/viewform

 

I did not create these google documents.  I want to thank the person who did (I’m not sure who that person is, sorry).  Thank you for putting this together!

 

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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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The Silence Around Fluoroquinolone Toxicity

I posted this – http://www.hormonesmatter.com/epidemic-silence-adverse-drug-reactions/ on Hormones Matter on October 17, 2013.  It was originally similar to the post below but I changed and edited it until it became what I submitted to Hormones Matter.  I still like the earlier draft and since it’s more Flox focused, I thought I’d share it on here.  As always, thanks for reading!

The Silence Around Fluoroquinolone Toxicity

One of the more bothersome feedback loops that keeps the dangers of fluoroquinolones from being recognized is that people stay silent about their pain and suffering, and therefore their pain and suffering is not recognized or appreciated, and everyone in the medical field gets to continue to think that these drugs are safe and that adverse reactions are rare. Seeing is believing and they don’t see it, in part because people aren’t screaming. Of course, there are people who are screaming at the top of their lungs about the pain and suffering caused by fluoroquinolone antibiotics who are systematically disregarded, and that’s a problem that has bothersome consequences and feedback loops as well, but it’s a topic for another post. This post is about people suffering in silence about the pain that Cipro, Levoquin, Avelox or Floxin has caused them.

People stay silent for a variety of reasons. There is a lot of shame associated with getting sick. People feel bad about what they can no longer do. They feel responsible for the role that they played in taking those pills, or insisting on them from their doctor, or administering them to their child, and they hide in shame. Also, a lot of the adverse effects of fluoroquinolones are CNS related, meaning that they can adversely effect many areas of mental health. People are notoriously ashamed and silent about mental health issues. It is easier to deal with anxiety, memory loss, depression, panic, etc. alone, in silence, than it is to speak up about what happened. After all, if you speak out about experiencing mental health issues, you run the risk of being labeled as crazy. Additionally, Fluoroquinolone toxicity takes its toll on every system in the body and therefore it is difficult to describe what is going wrong. How does one explain, to anyone, that EVERYTHING is going wrong? It’s too difficult and people sound and feel crazy, so they stay silent. When people ask their doctor about the possibility that the drug that they took caused the myriad of symptoms that they now experience, and the doctor denies that it’s possible that the drug that they prescribed could do what it has done, people assume that their doctor is right, or that they at least aren’t entitled to question their doctor’s expertise. After all, their doctor went to school for a long time and knows what they’re talking about… right? So people assume that they are wrong, their doctor is right, and they stay silent. There are a variety of other reasons why people stay silent about the travesty that is Fluoroquinolone Toxicity. All of them feed into the real risks of these drugs being under-recognized. The silence is, sadly, as much of an epidemic as the pain.

A friend of mine went to a Psychologist to help her to get through the mental and emotional trauma of being Floxed and she told me that, as she was telling the Psychologist her story, the Psychologist started to cry because a few years ago her (the Psychologist) knee swelled up and she experienced over-all tendon inflammation after taking Levoquin. When she asked her Doctor about it, her Doctor told her that the Levoquin couldn’t possibly be the cause of her pain. She knew differently but didn’t say anything. She recovered and didn’t think much of the period that she went through with painful, inflamed tendons much again. My friend’s experience and story validated the Psychologist’s pain, suffering and notion that Levoquin was the cause of her tendinitis, and it freed her to be able to acknowledge that she too was a victim of fluoroquinolone antibiotics. Before my friend visited her, the Psychologist thought that she was wrong, or the only one, or that her Doctor must know better, or that her story didn’t matter enough to scream about it – after all, she did recover – and she suffered in silence. She didn’t get the support that she deserved. She didn’t get the acknowledgment that she deserved. No one saw her pain and suffering because no one, including her, acknowledged that it existed.

I went out on a date a few months ago with a guy who was clearly Floxed but he didn’t know it until I told him my story. He had been treated with multiple types of antibiotics for a “chest infection” that was really acid reflux that was making him cough incessantly. He kept going back to his doctor for more and more powerful antibiotics because the mild antibiotics that he was given didn’t get rid of his cough – of course, because it wasn’t from an infection. His doctor eventually prescribed him Cipro and he had an adverse reaction to it. Most of his adverse reaction was mental (but he also lost his endurance and had an increased heart rate that he struggled to get down). He had a severe anxiety/panic attack and he thought that he was about to die. His sister flew to the U.S. from Sweden to be at his side because he thought he was dying. He lost his memory. He lost his composure and was barely able to do his job in software sales. He was clearly sick. But he stayed silent because he was ashamed of having mental issues. He never connected his sudden onset of mental health issues and the antibiotics that he took, and thus his doctor got to continue to think that he was a healthier than average person and that Cipro was a perfectly safe drug.

I have always talked about what was going on in my body and mind. Silence is not something that I have ever been afflicted with. I have always felt the need to be understood, to be recognized and for my pain to be acknowledged. I am lucky enough to have friends and family members who listen to me. Despite being a talker, I still felt like I lost my voice for a while. I felt like I couldn’t really explain what was going on. I felt like there was a wall between myself and those that I was trying to talk to. I think that feeling socially isolated is a symptom of being Floxed and that it’s really difficult to explain something like Floxing to people. It is ABSURD that a prescription antibiotic that is used all the time could cause my body and mind to explode like it did. I knew that what I was saying sounded absurd, and that people didn’t understand what was going on, so there was that barrier to my voice being heard. It didn’t stop me from yapping though. 🙂

I hope that all of you who are afflicted with silence start screaming about your reaction soon. It’s not okay that you were hurt by a prescription antibiotic. It’s not okay for these drugs to take away your ability to walk, your ability to think, your ability to speak, etc. I hope that you all gain your voice back, that we are all heard, and that this absurd situation starts to change.

 

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Letter to Phil Blake, CEO of Bayer

Phil Blake

The picture above was posted by Jeff of www.ciproispoison.com on some of the Fluoroquinolone Toxicity facebook groups.  It got me thinking, if I got on the phone with Phil Blake, CEO of Bayer, what would I say?  I know that I wouldn’t say the “right” things and that I would kick myself for everything that I did say, so I thought that I’d write him a letter.  I didn’t want the letter to be too angry, crazy or irrational so I wrote a letter that tried to appeal to his humanity.  I wrote another letter in which I tried to shame him into using the massive resources that Bayer has to fix the problems that they created.  Neither of the letters really worked.  I didn’t like them.  They just didn’t seem appropriate.  They either erred on the side of being too angry or too nice.  They’re sitting on my computer, not on this blog, because I didn’t want to share them.

The thought entered my mind today that what I want to say to Mr. Blake is pretty simple.  Here it is:

Dear Mr. Blake,

When the people of the world discover that your drugs, Cipro and Avelox, have permanently and irreversibly altered their DNA (or possibly just their mitochondrial DNA, but does it really make a difference?), that a sick and cruel experiment involving genetically modifying humans for corporate profit has been conducted, you, your board, your top executives and your top scientists will be tried for crimes against humanity.  You will be found guilty, because you are.  I can only hope that both you and I live long enough to see the day that you are sent to prison for your crimes.

Sincerely,

Lisa Bloomquist

One long sentence and two short ones.  Is it angry, bitter, delusional, crazy, ill-advised (from a legal standpoint), etc.?  Yeah, it’s probably all of those things.  Oh well.  It’s better than the sugar coated ones.

It’s not exactly hopeful, and I apologize for that.

I hope that I am delusional and just simply wrong.  After all, I’m not a scientist.  Lisa being wrong would be best for the world.  You should probably believe that I’m wrong.  In case you want to consider the possibility of me being right, here are the articles that I’m basing this post on:

http://www.jbc.org/content/273/42/27668.full

http://www.nature.com/nature/journal/v501/n7465/full/nature12504.html

http://www.nmcth.edu/images/gallery/Editorial/xRZVmps_ambulkar.pdf

https://www.youtube.com/watch?v=IkKZ_gxAOXI

More can be found on https://floxiehope.com/links-resources/ and, of course, the rest of the internet (or the library).

Back to the hope thing, I am fine.  Other people have healed too.  Most people get better with time, not worse.  The body has amazing healing capabilities.  You are not screwed.  You are not doomed.  You will be okay.

Mr. Blake, on the other hand, is screwed if people start paying attention.  I can only hope – and write.

 

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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

Hormones Matter Logo

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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FDA Announces that Permanent Peripheral Neuropathy is to be Added to Warning Labels for Fluoroquinolone Antibiotics

 Essay #1

On August 15, 2013 the FDA announced that a new, highlighted warning would be added to all orally administered and injected fluoroquinolone antibiotics (Cipro, Levaquin, Avelox, etc.), noting that these drugs cause peripheral neuropathy.  The announcement can be viewed through this link – http://www.fda.gov/Drugs/DrugSafety/ucm365050.htm The Related Information links give further details on the dangers of fluoroquinolones and the rationale behind the FDA’s decision to finally, after 30 years of consumer complaints, to warn people of this devastating effect of fluoroquinolones.

The FDA announcement is a HUGE step in the right direction. Now, when patients go to their doctors with sudden, severe pain in their extremities, their doctors are going to be more likely to connect the patient’s peripheral neuropathy with the fluoroquinolone antibiotic that the patient took.  As more and more doctors make the connection between their patients’ painful, burning, swollen feet (among other symptoms of peripheral neuropathy) and fluoroquinolones (again, Cipro, Levaquin, Avelox, etc.), they will be more likely to recognize the severity and frequency of adverse reactions to these drugs.  They may even start connecting the other symptoms that their patients experience with fluoroquinolones and really, truly acknowledging the damage that these drugs do.  This recognition may/should/will start the ball rolling in the direction of doctors actually using fluoroquinolones appropriately – as a drug of last resort, to be used only in life-or-death situations.

At the very least, this new warning increases the likelihood of a correct diagnosis from a doctor for those who are suffering from Fluoroquinolone Toxicity Syndrome.  When I went to my doctor with swollen, painful, weak hands and feet (and hives all over my body), she told me that it wasn’t possible that my issues were from the Cipro that I had taken 2 weeks earlier.  She was wrong.  Now that this warning label has been added, it is less likely that she’ll misdiagnose the next patient who comes to her with similar symptoms.  She is more likely to realize that Cipro, Levaquin, Avelox and other fluoroquinolones are dangerous drugs with severe consequences to the health of her patients.

The doctors who connect the peripheral neuropathy that their patients experience with  fluoroquinolones will be more likely to report the adverse reaction to the FDA.  As more and more reports of adverse effects of fluoroquinolones are reported, it is more likely that the real risks of these drugs are properly established, by the FDA and physicians alike.  Once risk is properly established, a more reasonable protocol for their use can be established.

As someone who has suffered through Fluoroquinolone Toxicity Syndrome and peripheral neuropathy caused by Cipro (taken to treat a simple UTI), I’m thankful for the FDA’s acknowledgment of the peripheral neuropathy that people experience as a result of fluoroquinolones.  Really, I’m grateful for the move in the right direction.  But there are some things that bother me about the announcement.

First, they state that, “The topical formulations of fluoroquinolones, applied to the ears or eyes, are not known to be associated with this risk.”  Really, FDA?  You think that these drugs applied in the ears and eyes don’t have devastating system-wide effects?  Fluoroquinolone ear and eye drops are typically in low enough doses that Flouroquinolone Toxicity Syndrome doesn’t result, but don’t you still think that the people who take the ear and eye drops (or administer them to their children) should at least know that these drugs cause permanent peripheral neuropathy when administered in another form?  It seems appropriate to at least make some sort of note about this serious side-effect, especially when these drugs are given to children to treat ear infections.  The specialist model of the Western medical system that treats each part of a body as separate and as if it doesn’t connect with the rest of the body, is absurd.  If a drug is dangerous when administered orally, it’s pretty likely to be dangerous when put into the eye.  It just seems negligent to not warn people of the adverse effects of a drug in all forms in which they’re available.

Second, they state that, “If a patient develops symptoms of peripheral neuropathy, the fluoroquinolone should be stopped, and the patient should be switched to another, non-fluoroquinolone antibacterial drug, unless the benefit of continued treatment with a fluoroquinolone outweighs the risk.”  Well, at least the standard instruction of “finish the entire course of antibiotics” is abandoned.  Instructing people to finish a course of a drug that they’re having a severe adverse reaction to is bad advice, to say the least – and it was standard protocol for years.  But there is the implication that if the patient stops taking the fluoroquinolone, the ceasing of taking the drug will help to stop the reaction that is causing the peripheral neuropathy.  Unfortunately, this isn’t the case.  At least the FDA mentioned that the peripheral neuropathy can be permanent, so the fact that it won’t be fixed by cessation of taking the drug is at least acknowledged.

The warning of peripheral neuropathy is the third highlighted warning on fluroquinolones.  The other two are for death in those with myasthenia gravis and tendon ruptures (for everyone, not just those with  myasthenia gravis).  Now that peripheral neuropthy is added to the list of side-effects that are severe enough to require a highlighted warning, maybe people will start realizing that these are dangerous drugs, and maybe doctors will start following their Hippocratic Oath and stop prescribing them in cases where other, safer antibiotics can get rid of the infection just as well.

Essay #2

On August 15, 2013 the FDA announced that a new warning label is to be added to all orally administered and injected (via IV) fluoroquinolone antibiotics (Cipro, Levaquin, Avelox, Floxin, etc.) warning people of the serious side-effect of peripheral neuropathy.  The FDA announcement notes that peripheral neuropathy is serious nerve damage and that it can be permanent.

http://www.fda.gov/Drugs/DrugSafety/ucm365050.htm

As someone who took Cipro and subsequently experienced painful peripheral neuropathy, I’ve got to say that this validation from the FDA feels pretty darn good.

As most sensible people would, I went to my doctor when I broke out in hives all over my body, my hands and feet were swollen and painful, my tendons throughout my body were tight and my legs were so weak that I could barely stand.  I was told that they didn’t know what was wrong with me.  As far as missed diagnosis’ go, “I don’t know” is a pretty benign one, so I’m thankful for it.  I could have been incorrectly told that I had Rheumatoid Arthritis or a number of other diseases that my symptoms mimicked (M.S., Lupus, Fibromyalgia, Lyme Disease, Chronic Fatigue Syndrome, Leaky Gut Syndrome, etc.).  When I asked my doctor if it was possible that the Cipro that I had taken prior to the emergence of my symptoms, she told me that it wasn’t possible.

It’s not only possible, it’s true.  The FDA announcement confirms what I already know to be true – Cipro caused my peripheral neuropathy (and all my other health problems, but the FDA hasn’t confirmed that yet).

VINDICATED!  After 20 months of health issues caused by Cipro, an ANTIBIOTIC I took to treat a simple urinary tract infection, the FDA finally confirmed that the peripheral nerve damage that I suffered from was caused by the pharmaceutical I took, the so-called medicine.

Perhaps someday the FDA will put a highlighted warning on fluoroquinolone antibiotics about the CNS damage that they can cause.  Yup, CNS damage.  That’s brain damage, folks.  A petition is circulating to get a warning of the risk of CNS damage added to the labels of all fluoroquinolones.  Please sign it – http://www.change.org/petitions/food-and-drug-administration-department-of-health-and-human-services-black-box-warning-for-fq-drugsand-cns-damage  People deserve to KNOW about the devastating, sometimes permanent, adverse effects of these drugs.

There are now three highlighted warnings on the labels for fluoroquinolone antibiotics (Cipro, Levaquin, Avelox, Floxin, etc.)  One warning of increased risk of developing tendonitis and TENDON RUPTURE, another warning of DEATH in patients with myasthenia gravis, and now another warning for possible permanent PERIPHERAL NEUROPATHY.  Additionally, the FDA is being petitioned by consumers who have suffered from brain damage to add CNS damage to the list of warnings.

Do ya think that there may be a problem with these drugs?

Yes, there’s a problem with these drugs!  And given the rampant use of them, 26.9 million people were either given fluoroquinolone pills or IVs in 2011 (per the FDA) and the rate of adverse reactions ranges from 4.4% to 20% (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249743/?report=printable), it’s a BIG problem!  Do the math, you’ll find that one to five million people were adversely effected by these drugs in 2011 alone.  Adverse reactions can range from an annoying but harmless eyelid twitch to body-wide breakdown and PERMANENT PERIPHERAL NEUROPATHY, TENDON RUPTURE and even DEATH.

Serious policy changes need to be enacted around these drugs.  They can sometimes be necessary to save a life and therefore they shouldn’t be banned.  But maiming and disabling people with a class of antibiotics when there are other, safer antibiotics available, is ABSURD and it’s WRONG.

The new warning is a good start, but we need you to keep going, FDA.  Do what should have been done years ago.  The research is out there.  Pay attention and do what’s right.  Please.

A song – 

 

 

Is Fluoroquinolone Toxicity Rare?

I’ve come to hate the word rare. As in, “your reaction is rare,” or “those side-effects are rare,” or “it’s rare for someone to suffer from adverse effects from fluoroquinolones.” It’s such a dismissive thing to say. As if it’s okay for this to happen as long as it’s “rare.” As if it’s okay for a certain number of people to be collateral damage as long as the devastation that they experience is “rare.” As if it’s okay for there not to be any research or resources or justice or answers to questions because the problem is “rare.” As long as what you experience is labeled as “rare,” it doesn’t matter. Your experiences, your pain, your health, stops mattering. You become statistically insignificant.

It’s not a very nice thing to say to people. People who are trying to tell their stories. People who are trying to be heard. People who are trying to get answers, justice and cures. People who have been attacked and who need their pain and suffering to be acknowledged. Telling them that they are insignificant, rare, is just mean.

And is it true? Are adverse effects of fluoroquinolones really rare? How, I wonder, would anyone have a clue? Seeing as there is no recognized diagnosis of (name for) Fluoroquinolone Toxicity Syndrome / Floxing, most people who suffer from it are misdiagnosed. They are either told, as I was, that there is nothing detectable wrong. There was definitely something wrong with me, but “I don’t know” is the most benign wrong answer possible, so I’m thankful for it. Other people who have doctors who are less willing to admit that they don’t know are diagnosed with fibromyalgia, arthritis, chronic lyme disease, leaky gut syndrome, chronic fatigue syndrome, bipolar disorder, depression, anxiety, rheumatoid arthritis, M.S., lupus, sjogren’s disease, or, in children (shudder), autism or autism-like symptoms.  Plenty of people who are floxed end up with one of the diseases listed, and fluoroquinolones may (um did, but that’s a bold assertion when I have no proof) have even caused those diseases to emerge.  (All of the diseases listed are complex diseases with multiple causes – fluoroquinolones are NOT the only cause of them and they are not the only cause of symptoms like those of the diseases listed above.  I’m just saying that sometimes, possibly often, people who are suffering from Fluoroquinolone Toxicity Syndrome are misdiagnosed with those diseases, and for some of the autoimmune diseases, fluoroquinolones may contribute to them.)  So people who should have at least a partial diagnosis of Fluoroquinolone Toxicity Syndrome / Floxing / whatever it ends up being called, end up being put into a different disease category and everyone gets to remain willfully ignorant, thinking that adverse effects from Cipro, Levaquin and Avelox are “rare.”

The fact that adverse effects of fluoroquinolones are often delayed makes the connection between the cause (fluoroquinolone antibiotics) and effect (bomb in body and mind) difficult to see. Patients and doctors alike are failing to make the connection between fluoroquinolones and the symptoms that are the manifestation of an adverse reaction to them.

As far as I know, there has never been a study of fluoroquinolones that takes into account the delayed adverse reaction to them that many people experience. Another thing that I have never seen taken into consideration is the fact that there seems to be a threshold for fluoroquinolone tolerance. Some people react negatively to their first pill, but most people tolerate fluoroquinolones for a while (some people can take 5 pills, some can take 500 pills) then, once their threshold is reached, they have a severe adverse reaction. If neither delayed reactions nor thresholds (nor cumulative effects) are being studied, how in the world would anyone have a clue how often adverse reactions truly occur?

The less noticeable adverse effects of fluoroquinolones, effects like mild insomnia, memory loss, urgency of urination, painless muscle spasms, etc. (a list can be found here – https://floxiehope.com/2013/07/10/warning-signs/ ) can even be mis-attributed to aging, dehydration, etc. Though these effects are mild and nothing compared to the triggering of an autoimmune disease-like reaction like full-on floxing is, they’re still adverse effects and they’re still damage done to people by fluoroquinolones. I doubt that these effects are rare. They probably happen to most people who take fluoroquinolones. But they are rarely reported and rarely connected to fluoroquinolones, and thus, everyone gets to continue to think that adverse reactions are rare.

No one really knows how frequent adverse effects of fluoroquinolones are because no one is looking at the full picture and no one is asking the right questions.

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Of course, I’m a bit biased, but I see adverse effects of fluoroquinolones everywhere. I don’t have a large number of friends – I’m certainly not a “connector” – yet I have 4 friends (not including facebook friends) who have been adversely effected by a fluoroquionlone. I also went out on a date with a guy the other day who was telling me that he had a rash, an irregularly high heartbeat, loss of endurance, an anxiety attack and leaky gut syndrome after taking an antibiotic. I bet you a buck he was floxed.  He didn’t know, his doctor didn’t know, the FDA didn’t know and the pharmaceutical companies didn’t know, so everyone gets to go on thinking that his reaction didn’t happen, and the number of reported adverse reactions remains lower than the number of actual reactions.  A lot of people have been adversely effected by these drugs. Most of them recover, thank God. But suffering from any adverse effects from a drug when there are safe alternatives that will get rid of the infection, is wrong. And it isn’t RARE.

 

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Is Our Meat Floxed?

My favorite theory about the pathology/cause of floxing (of course, fluoroquinolone use is the CAUSE of floxing, but not all people who use fluoroquinolones get floxed – something goes horribly wrong in the bodies of the people who do), is that a neurotoxin is produced by the damaged bacteria within the body and that neurotoxin is the actual cause of the health problems that Floxies experience. More information on this theory can be found on https://floxiehope.com/2013/06/20/test-post/ and at the bottom of this page.

This theory, that neurotoxins are produced when fluoroquinolones mess up the bacteria, makes me think about a lot of things. One of these things is our meat.

Fluoroquinolones are used rampantly in agriculture, even though there has been some regulation limiting their use. If fluoroquinolones cause the production of neurotoxins, could it be possible that these neurotoxins are in the flesh of the animals that are exposed to fluoroquinolones – the meat that we eat? If so, what are the health consequences of this to the humans who eat that meat?

I believe that meat is tested for antibiotics and other agriculturally utilized pharmaceuticals before it goes to market, but if the meat is actually contaminated with a neurotoxic byproduct of the pharmaceutical, as opposed to the pharmaceutical itself, then maybe the wrong thing is being tested for. Is our meat contaminated with neurotoxic byproducts of fluorquinolone antibiotics? I don’t know, but it’s something that is definitely worth looking into.

Admittedly, this line of thinking involves a lot of unproven jumps and assumptions, but I don’t think that I’m being completely unreasonable. The theories described below seem more than reasonable, they seem right, and I think that looking into the health consequences of eating meat that is from animals that have been floxed is something that we should do. Question everything. It’ll keep you safer and make you smarter.

There are many good reasons not to use fluoroquinolone antibiotics on livestock animals. Antibiotic resistance is becoming a bigger and bigger problem and the thought that we may be breeding antibiotic resistant bacteria in our feedlots is appalling. This problem, though not without controversy, is generally acknowledged and some regulation is being put into place to try to prevent an atrocity from happening. However, humans are slow to change the status quo unless there is an emergency and I doubt that real, meaningful regulation will come about until an antibiotic resistant bacteria is bred in feedlots and that bacteria infects people. Antibiotic use in livestock also enables ranchers to keep their animals in dirty, unsanitary, inhumane conditions – something that is also appalling. Even though I haven’t done a whole lot of research into the topic, I think that with the research that has been done, we can add potential contamination with neurotoxic byproducts to the list of reasons that antibiotics generally, and fluoroquinolones specifically, should not be used in livestock.

I like meat and I eat it, but I’ve tried to exclusively consume organic meat since I got floxed. I’m going to try harder now. I suggest that you do the same.

From https://floxiehope.com/2013/06/20/test-post/

Is a neurotoxin produced by the damaged/bad bacteria after exposure to fluoroquinolones (or the die-off of the “good” bacteria that keep the bad ones in check)?  There are several interesting things noted in Beyond Antibiotics by Michael Schmidt.  Dr. Schmidt points out that both tartaric acid and tricarbalyte are noxious compounds produced by bad gut bacteria when good gut bacteria in the gut are not available to keep them in check.  Tartaric acid “is a known poison of the energy system of mitochondria,” and tricarbalyte “binds to magnesium and may reduce the availability of dietary magnesium.”  (pages 28-29) Dr. Schmidt also says that antibiotics cause the production of clostridiam which is a known neurotoxin producing organism (p. 44). And, on page 47 he says, “Whever a CPY enzyme is blocked or slowed, its ability to detoxify other drugs can be impaired.”  My thought on this is that the fluoroquinolones slowed our CPY enzymes then the NSAIDs, steroids, other toxins in our system, did other damage – and maybe that’s why each of us have so many different symptoms.

Also, John Travis reported in Science News (July 2003;164) that research performed by John F. Prescott found that certain antibiotics, such as the fluoroquinolones, the class of antibiotics that includes the name-brands and generic brands of Levaquin[R], Cipro[R], Tequin[R], and Avelox[R], actually are known to trigger a type of virus called bacteriophages (viruses that can infect bacteria) to change the genetic sequencing of the bacteria, causing the bacterium they have infected to start producing toxins. These viruses can act as genetic delivery vans, invading bacteria, such as spirochetes, often lying dormant, until activated by a change in the host (your body’s) environment. Once activated, these viruses insert their toxin-generating genes into the bacterial chromosomes. These viruses can turn basically harmless bacterium into killers through this genetic sequencing of toxins (Travis 2003).  Not only are these toxins released through bacteria die-off and not only can antibiotics actually increase the production of the toxins, but these viruses can cause the bacteria to rupture, spilling their toxins into the body (Waldor 2004).  http://www.benbrew.com/lb/lyme5.pdf

* I haven’t had the time to do a whole lot of research into this theory, so if anyone has any articles about it, please forward them on to me.

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Taking Supplements After Fluoroquinolone Toxicity

Supplements After Fluoroquinolone Poisoning

“I am not a doctor and none of the advice contained in this site should be seen as a replacement for the advice of a doctor or other medical professional. Please be careful with all supplements and treatments that you self-administer. Trusted supervision by a medical professional is a good idea.”

That’s the disclaimer that I have up on the Stories page of Floxie Hope. I have no idea how solid it is as a disclaimer. I’m not a lawyer either. Please don’t hurt yourself or sue me.

The disclaimer is understood. Sure.  Fine. We all know that each individual’s experience is different, their biochemistry is different, no one on here is doing a controlled scientific experiment because it’s IMPOSSIBLE to do a controlled scientific experiment on yourself, and we even know that we should probably avoid getting medical advice on the internet.

Fine.

But can you blame us?  What are we supposed to do? The doctors, the people who prescribed us a poison that MESSED US UP, could chat with us, but most Floxies are understandably wary of listening to their doctors. Doctors also have no answers. They have no advice, no course of action for us to take, and no cure. I don’t blame them for not having answers.  They just don’t know. They have no idea what is going wrong in our bodies or how to fix it. It would be nice if they tried to understand, explored different theories, answered the questions in my “What is going on???” post (https://floxiehope.com/2013/06/20/test-post/) compiled a database of what helps and what hurts, looked for a cure, etc. But seeing as we’re fighting to even get our ailments acknowledged and linked to fluoroquinolones, it’s pretty far-fetched to think that meaningful research into a cure is going to be done any time soon.

So we seek answers on the internet. We try different supplements that have helped other people. Luckily, unlike pharmaceuticals, supplements have an excellent safety record. But the combinations that any of us try may hurt us. We may inadvertently harm ourselves while trying to heal ourselves.  We don’t intend for that to happen, but it may.

I’ve had two minor mishaps with supplements. I took a niacin supplement and got a “flush” that scared the $*&% out of me. I recently started taking Magnesium Malate / Malic Acid (same thing, two names). It’s given me a nice energy boost, but it’s made it difficult to sleep.  Having a little more energy is not even close to worth insomnia – for me. Neither of these mishaps caused me any real harm. They were learning experiences. Taking Cipro was also a learning experience, but a lot of harm was done and the lessons learned came at a ridiculously high price.

I think that most of the supplements that I take help me in one way or another. I wouldn’t take them if I didn’t think that they were beneficial. Yeah, I see the benefit in each of them, but my attachment to them and the money that I spend on them isn’t completely healthy. I spend way too much money on supplements and I am only sure of the benefits of some of them. Iron, magnesium and chlorophyll help me immensely. I eat beets and brewer’s yeast daily and I think that something in them (probably the uridine) is helpful. What helped me may not help you so only take that for what it’s worth, not a lot, only a teensy bit more than your doctor’s advice, seeing as he/she knows nothing about this. (I say that tongue-in-cheek – but don’t take my advice as medical advice, seriously, don’t.)

It would be really, really, really nice if our doctors could acknowledge what happened to us, note that they don’t know how to fix us, and explore alternative treatments with us.  Hahahahahaha, I know, pipe dream, hahahahahahaha – I crack myself up.

I’m sure that it’s frustrating for doctors to hear from patients, “I heard about this remedy on the internet,” but if they can’t give any answers, seriously, what are we supposed to do?

I see the people who look for answers to their ailments on the internet as hopeful. We HOPE that there is something out there that can help us, that can cure us. We hope that someone else has found the magic combination of supplements and diet that will lift our brain-fog and cure our connective tissues. I don’t care if this hope is entirely false, hope is a good thing. I hope that the stories of hope and healing in this web site are helpful to you and that what worked for others works for you as well. Please don’t hurt yourself with supplements or diet, and especially don’t get hurt with pharmaceuticals again. And as always, have hope.

 

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Warning Signs of Fluoroquinolone Toxicity

Almost every time I mention how Cipro messed me up, I get the response, “Oh yeah, I’ve taken that – it doesn’t affect me.”  To which I respond, “I took it several times before I reacted to it too. My body went completely hay-wire the second time I took Cipro. Don’t take it again.”

Adverse reactions to fluoroquinolones aren’t allergic reactions, they’re something else. The pathology of adverse reactions to fluoroquinolones is unknown – to anyone (or, if someone knows, they’re not publishing research papers about it). My guesses to the pathology can be found at https://floxiehope.com/2013/06/20/what-is-fluoroquinolone-toxicity/.

Unlike allergic reactions, adverse reactions to fluoroquinolones often occur long after the fluoroquinolone use has stopped. Antihistamines do nothing to stop an adverse reaction to a fluoroquinolone (though they may be able to help with some of the inflammation symptoms and they don’t seem to hurt most Floxies).

Though some people react to their first dose of a fluoroquinolone, many don’t, which leads them to falsely believe that these drugs are safe and that they won’t react to them in the future. Unfortunately, an adverse reaction to a fluoroquinolone can occur even if (maybe especially if – because there is (anecdotal) evidence that fluoroquinolones accumulate in the body and that there is a “tipping point” at which the body overloads) they have been taken with no adverse reaction in the past.

Looking back, I had some of these warning signs after I took Cipro the first time, in 2010. My eyelid twitched and I developed strange, but passing, abdominal cramping.  I experienced a “weak bladder” that I attributed to genetics and age. I had itchy legs at times and just thought it was dry skin. I didn’t connect any of these things to the prescription antibiotics that I took to treat a urinary tract infection.

If I had connected those symptoms to the fluoroquinolones, I may have been able to avoid taking Cipro again, and I may have avoided the pain and suffering that I went through starting in December, 2011.  (https://floxiehope.com/lisas-story/). I hope that this list of minor symptoms serves as a warning to you.  Please don’t take any fluoroquinolone antibiotics no matter what, but especially if you are experiencing any of the following, heed your body’s warnings and stay away from these drugs!

What FQ can do (HINTS AND CLUES THAT MIGHT SAVE YOUR LIFE)

Perhaps you have taken quinolones in the past and you think that they worked well and that you did not react negatively to them. Check the following subtle symptoms of the beginning stages of a quinolone intoxication from an earlier treatment and the normal interpretations that people make of them.

* You had a strange bout of tendinitis, for instance in the outer tip of the hip, normally diagnosed as trochanteric bursitis caused by tight belts or resting on you side at night. The same applies to other areas of the body, like the elbow (epicondylitis) diagnosed as an overuse of your tennis racquet or gardening practices, but you remember that you had never had it before.

* It takes you longer to recover after exercise. It is not alarming and you have not paid much attention to it.

* You sleep worse than before; it seems normal as you have a lot of pressure at work.

* From time to time you have some small throbbing pains in different parts of the body. They last only for a few seconds, so there is nothing to worry about it.

* It is strange- but you have occasional twitching in an eyelid, or any other part of the body. It is not painful.

* Some nights you feel some mild itching migrating along your body. One brief itch here, and another there. It is more intense in the scrotum or groin. Instead of identifying it as a peripheral neuropathy, you conclude that your clothes, your perspiration or the new brand of soap that is more irritating must be causing it.

* You feel some stiffness, and your range of movement is not as full as before, especially in one or both legs, but it is normal because you are getting older.

* You do not tolerate coffee as well as before. Now you have to reduce the amount of coffee that you used to drink.

* Your memory is not as good as it used to be. The cause may be too many things to think about and too much stress. And you are no longer a young person.

* There is an urge to urinate when the bladder is partially full. When you feel the need to urinate you have to rush for the toilet. Most urologists think that it is due to a dysfunction associated with a benign enlarged prostate but in reality it is a neurological deficit caused by the prescriptions of quinolones that they gave you.

* You cannot flex fully, or strongly, your big toe (one or both), or sustain the flexion for more than a few seconds. This is an indication that your large nerves (anterior tibialis) have started to fail due to the toxicity. This sign is a strong warning that your body will not tolerate more quinolones.

* Sometimes, you have nightmares while falling asleep that scare you. How strange you think. They are toxic panic attacks that reflect toxic damage to your brain.

If you have experienced some of these symptoms since you took your first quinolone, perhaps you have reached your first threshold of tolerance, that -once surpassed- can result in the destruction of your life soon thereafter if you take more quinolones.

 

 

The Shame of a Pharmaceutical Induced Illness

I have noticed some shame associated with floxing.  I have felt plenty of shame.  I haven’t wanted people to know that I was sick.  I haven’t wanted people to know how I got sick.  I haven’t wanted people to know that I’m dwelling on being sick or that I’m participating in support groups.  I certainly have felt some shame associated with having mental health issues – a lovely part of floxing.  I have felt shame at how I dealt with getting sick – badly – something that I can at least partly attribute to my mental health issues that were caused by getting floxed.  I have felt shame about the fact that I can’t do the things that I used to be able to do.  I have felt shame about my anger.  I have felt shame about not getting better more quickly (and I am a fast recovering Floxie).  I have felt shame over the fact that I’ve changed, that I’m just different now.   Lots and lots of stupid shame.  I have noticed that other people seem to feel shame about being floxed too.  They use a pseudonym when participating in the support groups, or they ask for things not to be shared with their friends or family members.  Shame, it appears, is part of being Floxed, for many people.

I wonder where this shame came from.  For me, in some cases it was justified.  I really did deal horribly with getting sick.  I was anxious, had psychotic thoughts and sought validation of my sickness and thoughts of my impending death.  My family was worried – justifiably.  And maybe it’s okay to feel a little ashamed of the fact that I’ve dwelled on being sick.  It’s not healthy to have a sickness form your identity.  More importantly, it’s not helpful.  But I really shouldn’t have been ashamed of getting sick, or any of my symptoms.  It’s not my fault.  And the fact that you got sick is not your fault.  And I shouldn’t have felt ashamed at the pace at which I recovered.  My body, mind and spirit healed as fast as they could.  Yours will too.

Shame, I think, ultimately stems from fear that you won’t be loved.  That you won’t be loved as a sick person.  That you won’t be loved as a person who can’t run, or play football, or dance, or whatever.  That you won’t be loved as an anxious person.  That you won’t be loved as a person who isn’t as smart as you used to be.  That you won’t be loved as a tired person.  That you won’t be loved as a Floxie.  So you hide your sickness, your anger, your pain, and you feel ashamed.

I’m not sure what to say to any of you who can empathize with this post, other than stop it.  Stop feeling ashamed.  Stop hiding.  Stop being afraid.  And you may just find that you are loved just the way you are, busted tendons and all.

You are sick.  You are not broken.  You are not less.  You have nothing to be ashamed of.  You have no reason to hide.  You are loved.  Even if you are sick and scared and can’t move or think, you are loved.  You are loved by your friends and family.  Even if you don’t feel the love from them, don’t believe the love from them, you are still loved because love is within you.  You are loved.  You just are.

 

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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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What is Fluoroquinolone Toxicity???

Cipro Molecular Structure

What is the pathology and what is the cause of floxing???  I’ve jumbled up theories of cause and pathology in the following list:

Is it an autoimmune disease/reaction?  ‘Cause that makes sense.   Many of the symptoms are similar to those of known autoimmune diseases like Rheumatoid Arthritis, Multiple Sclerosis or Lupus.  The connective tissue, tendons, ligaments, fascia, etc. of Floxies is being attacked.  If it’s being attacked by the immune system, well, that’s an autoimmune disease.  Which leads me to – AN ANTIBIOTIC TRIGGERED AN AUTO-IMMUNE REACTION – ARE YOU EFFING SERIOUS???  But it may not be….

Is it a serum sickness?  ‘Cause that makes sense.   My uncle who is an orthopedic surgeon thinks that it is.  This article describes floxing as a serum sickness – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC171716/

Is it a toxic reaction?  ‘Cause that makes sense.  A drug is a toxin, right?  So if we get it out of our systems, we’ll be fine, right?  Unfortunately, this, the simplest of explanations, is the easiest to dismiss.  If it was a toxic reaction, people wouldn’t have delayed reactions.  When I went to the doctor, two weeks after I finished taking Cipro, and asked her if my symptoms had anything to do with the Cipro, she said no because (she didn’t know any better and) the Cipro should have been out of my system by then.  She’s probably right.  The Cipro had been metabolized.  But while it was there, it did something horrible to every cell in my body.  Maybe there are lingering pockets of toxins that we can just clean up and be cured…. But I don’t think so.

Is it an inhibition of the CYP1A2 enzyme?  ‘Cause that makes sense.  Fluoroquinolones inhibit the CYP1A2 enzyme in the liver, according to http://www.pharmacytimes.com/publications/issue/2007/2007-11/2007-11-8279.  Cures include smoking tobacco and eating broccoli.  You don’t want to start smoking, I wouldn’t/don’t…. But if it will enable you to walk, well, I can’t blame you.

Is it mitochondrial damage?  The general consensus among Floxies is that their mitochondria is damaged.  Another Floxie blog goes into this theory – http://www.floxedbylevaquin.com/p/mitochondrial-disease.html.  This may be an entirely false line of logic seeing as cellular energy and how energetic you feel are different, but mitochondrial damage may explain the exhaustion that Floxies feel.  Harvard researchers seem to be on this track – http://www.worldpharmanews.com/research/2481-dodging-antibiotic-side-effects

Is it dna damage?  Fluoroquinolones “prevent bacterial DNA from unwinding and duplicating” (according to http://en.wikipedia.org/wiki/Fluoroquinolone).  Do they also prevent our DNA from unwinding and duplicating?

Is it an inability to absorb magnesium and other minerals?  Given that magnesium and other mineral supplements are the only supplements that seem to reliably help most Floxies, and that many floxing symptoms are similar to that of magnesium deficiency this explanation seems pretty likely.  Unfortunately, popping a magnesium pill every day doesn’t seem to fix the problem.  Also, according to “Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population” by Doctors Hall, Finnoff and Smith (do I have to site it correctly on a blog?), “Results of studies have shown that magnesium-deficient diets are capable of producing cartilage changes similar to that caused by fluoroquinolone exposure in both canines and rats, and dietary magnesium supplementation was able to reduce the histologic changes in rats exposed to fluoroquinolones.”  More information regarding the relationship between floxing and magnesium can be found in the article which can be found in Musculoskeletal Medicine, Vol. 3, pages 132-142, February 2011, published by the American Academy of Physical Medicine and Rehabilitation.  Email me for a copy. Also, here is a list of drugs that deplete magnesium from the body.  Cipro and Levquin are on it –  http://www.jigsawhealth.com/resources/drug-muggers-suzy-cohen-magnesium

Is it a methylation issue / MTHFR gene mutation?  A lot of Floxies have been tested for the MTHFR gene mutation and all who have tested and reported back have had the mutation.  I honestly don’t know enough about this line of thinking to comment much on it.  Here’s some info – http://www.methyl-life.com/index.html.

Is it something to do with blood? Iron, chlorophyll and beets are all supposed to help production of red blood cells, and those are the things that help me the most.  Maybe our blood doesn’t carry oxygen as well as it did.  Why/how did fluoroquinolones effect my blood’s ability to carry oxygen?  I have no idea.  I don’t even know that the above statement is true.  I do know that blood tonics such as iron, chlorophyll and beets help me though.

Is it something that inhibits our absorbtion of uridine?  Beets make me feel better, and I’ve been having Brewer’s Yeast daily for about a year.  Maybe the uridine in those things is helpful.  http://www.spanimax.com/index.php/omega-3-and-uridine

Is it something hormonal?  I know that my symptoms get significantly worse just before my period and during my period.  Hormones have some effect on floxing – I just don’t know what it is.  Hormones may explain cycling too.

Is it something going hay-wire in our Gaba receptors?  Dr. Flockhart, a doctor who has seen many Floxies, believes that floxing causes interference with the Gaba receptors throughout our brains and bodies.

Is a neurotoxin produced by the damaged/bad bacteria after exposure to fluoroquinolones (or the die-off of the “good” bacteria that keep the bad ones in check)?  There are several interesting things noted in Beyond Antibiotics by Michael Schmidt.  Dr. Schmidt points out that both tartaric acid and tricarbalyte are noxious compounds produced by bad gut bacteria when good gut bacteria in the gut are not available to keep them in check.  Tartaric acid “is a known poison of the energy system of mitochondria,” and tricarbalyte “binds to magnesium and may reduce the availability of dietary magnesium.”  (pages 28-29) Dr. Schmidt also says that antibiotics cause the production of clostridiam which is a known neurotoxin producing organism (p. 44). And, on page 47 he says, “Whever a CPY enzyme is blocked or slowed, its ability to detoxify other drugs can be impaired.”  My thought on this is that the fluoroquinolones slowed our CPY enzymes then the NSAIDs, steroids, other toxins in our system, did other damage – and maybe that’s why each of us have so many different symptoms.

Also, John Travis reported in Science News (July 2003;164) that research performed by John F. Prescott found that certain antibiotics, such as the fluoroquinolones, the class of antibiotics that includes the name-brands and generic brands of Levaquin[R], Cipro[R], Tequin[R], and Avelox[R], actually are known to trigger a type of virus called bacteriophages (viruses that can infect bacteria) to change the genetic sequencing of the bacteria, causing the bacterium they have infected to start producing toxins. These viruses can act as genetic delivery vans, invading bacteria, such as spirochetes, often lying dormant, until activated by a change in the host (your body’s) environment. Once activated, these viruses insert their toxin-generating genes into the bacterial chromosomes. These viruses can turn basically harmless bacterium into killers through this genetic sequencing of toxins (Travis 2003).  Not only are these toxins released through bacteria die-off and not only can antibiotics actually increase the production of the toxins, but these viruses can cause the bacteria to rupture, spilling their toxins into the body (Waldor 2004).  http://www.benbrew.com/lb/lyme5.pdf

Did we have something in our system that “supercharged” the fluoroquinolone antibiotics?  Maybe we had trace amounts of silver in our system that made the FQs many times stronger – http://www.scientificamerican.com/article.cfm?id=silver-makes-antibiotics-thousands-of-times-more-effective.  Or, maybe we had some grapefruit juice in our system and it produced that enzyme that kept us from metabolizing the drugs.

FQs are topoisomerase inhibitors and that the primary cause of our issues is likely DNA and mtDNA damage from massive transcription errors as a result of the chemical inhibition of proper cellular replication. That is the effect of a topoisomerase inhibitor, after all. They simply affect both prokaryotic AND eukaryotic DNA, despite what the literature states.  Recent research has proven this about FQs. That is why you get the delayed effect. It takes weeks to months for those damaged cells to replicate.
http://biology.about.com/od/cellanatomy/a/eukaryprokarycells.htm

Further, “FQs are currently being investigated for their chemotherapeutic properties. This research would not be possible if FQs didn’t affect eukaryotic cells.  FQs damage DNA by via inhibition of topoisomerase enzymes. This causes the DNA to not unwind, replicate, and then rewind back into the double helix structure correctly. This introduces transcription errors into the DNA itself. The body then recognizes these errors and attacks. This process should be over in a relatively short period of time. Unfortunately, I also think FQs alter the DNA of long lasting immune cells (killler B and T cells for example) which normally remain in the body for years or decades. I think once this happens, the body then develops the autoimmune issues. Also, it is a fact that once you cause the DNA and mtDNA damage, then you see a huge spike in the amount of ROS in the body. There was a study done of Indian men given Cipro for UTIs that proved that. What would you expect the body to do if you damage the ability of the mito to efficiently turn food into energy? You would get an increase in the amount of reactive oxygen species causing a cascade of cellular damage.  Also, it is well known that the human body would simply fall apart without many types of bacteria. Now what if you introduce a chemical into the body that destroys and/or causes mutations in the DNA of said bacteria? I think all of what I previously stated combines to cause our issues.”

Did Fluoroquinolones cause us to become Histamine Intolerant or to have excess histamine?  Here are the ways that this makes sense.  First, drugs can inhibit the enzymes that keep histamine levels in check.  Fluoroquinolones aren’t listed as drugs that can do so, but NSAIDs, one category of drugs that can trigger a reaction to Fluoroquinolones, are – http://healthypixels.com/?p=1044.  Second, “Histamine is versatile–it helps to regulate body functions as diverse as digestion, sleep, sexual function, blood pressure, and brain function.  How does this one molecule do so many different things?  The secret to histamine’s multi-faceted nature lies in which type of cell and which type of receptor it binds to.  For example, when histamine binds to special cells in the stomach called parietal cells, they respond by producing stomach acid.  When histamine binds to receptors on the surface of blood vessel cells, blood vessels dilate, dropping blood pressure. Small vessels called capillaries become leaky and fluids ooze out of them, which can lead to runny nose, watery eyes, and puffy skin/fluid retention.  In the brain, histamine acts as a neurotransmitter, carrying chemical messages between nerve cells.” (from http://diagnosisdiet.com/histamine-intolerance/)  Also, estrogen and histamine reinforce each other, which may explain why menstruating women have flare-ups of their floxing symptoms when they experience PMS.  BUT, histamine doesn’t adequately explain a lot of other things.  First, Fluoroquinolone Toxicity is NOT an allergic reaction, at least not in the sense that we think of allergic reactions, with an immediate, severe reaction that can include anaphylactic shock and ceasing of the reaction when exposure to the allergen has stopped and an antihistamine is administered.  Adverse reactions to fluoroquinolones can begin weeks or even months after exposure to the drug has stopped; after it SHOULD be fully metabolized and out of the body.  Also, antihistamine drugs like Benadryl, Claratin and Zyrtek don’t seem to do much for those who are suffering from Fluoroquinolone Toxicity.

Do fluoroquinolones damage the myelin sheath that protects nerves?  Fluoroquinolones damage or disrupt the Central Nervous System, the Peripheral Nervous System and the Autonomic Nervous System.  This leads me to believe that they damage or disrupt nerves over-all.  Perhaps the myelin sheath that protects nerves is attacked by fluoroquinolones.

Do fluoroquinolones cause a massive amount of oxidative stress on the body and does that oxidative stress cause the damage?  A 2011 study published in the Journal of Young Pharmacists found that, “There is significant and gradual elevation of lipid peroxide levels in patients on ciprofloxacin and levofloxacin.”  They also found that “There was substantial depletion in both SOD (superoxide dismutase, “a free radical scavenging enzyme”) and glutathione levels” and that “On the 5th day of treatment, plasma antioxidant status decreased by 77.6%, 50.5% (and) 7.56% for ciprofloxacin, levofloxacin and gatifloxacin respectively.” The study also notes that administration of fluoroquinolones leads to a marked increase in the formation of Reactive Oxygen Species (ROS) and that “reactive free radicals overwhelms the antioxidant defence, lipid peroxidation of the cell membrane occurs. This causes disturbances in cell integrity leading to cell damage/death.”

All of these theories make sense and it would be really nice to know which one is correct. Basically, what the hell is going on in our bodies?  Why are we falling apart?  Why do some people get better and others don’t?  Why do FQs effect some people and not others?  It’s all so confusing and frustrating.  If some research on where to even start could be done… that would be helpful.

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