Tag Archives: Food and Drug Administration

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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Permanent

I really appreciate that the FDA has put the word “permanent” on the warning labels of fluoroquinolones.  “The nerve damage may be permanent” is now stated under the peripheral neuropathy section of the side-effects listed.  Permanent.  Physicians may take note; they can do permanent damage to their patients with these drugs.  It may make them think twice.  It may make them realize the severity of the adverse effects of fluoroquinolones.  They may see that they can do damage with these drugs that they can’t fix.  Permanent damage.

While it is wonderfully validating to see the words “The nerve damage may be permanent” on the updated label for Cipro, there’s a part of me that hates that word – permanent.  It’s a word that steals people’s hope.  It’s a word that feeds into fear, hopelessness and suicidal ideation. It’s a word of doom.

You are not doomed.  There is nothing about you that is permanent.  Nothing is permanently damaged.  Nothing is permanently perfect.  We are all in a state of flux, all the time.  Sure we’re all decaying a bit, it’s the nature of living things, but we are also growing and healing.  People recover from this.  They do.  I did.  Lots of other people have recovered too.  There are stories of hope and healing on this site.  Sure, it’s not a huge number of stories right now, but the site has only been up for a couple of months and, well, the people who have healed have moved on with their lives.  If I may be so audacious, I would say that MOST people recover, with time.  It’s a really long, rough, painful, scary road, but people get down it.  People get to the end.  They recover.  I hope that you can find the strength to believe that you will recover too.  If you can’t find that strength today, I hope that you can find it tomorrow.  Because this life is worth fighting for.  Not only your health, but your hope and your spirit are worth fighting for as well.

As someone said in one of the fluoroquinolone victim support group sites, “no side effect can be proven permanent until you’re dead.”  True.

So hang in there folks.  I know that it’s a trite thing to say, and I apologize for that, but I mean it.  Just take one breath at a time.  You can get through this.  Bayer and Johnson & Johnson may have kicked you, but they didn’t kill you.  You’re still here.  You can recover.  Have hope.  Try.  ‘Cause it’s only permanent if it kills you, and it didn’t.

 

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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 – 

 

 

Ciprodex – Poison Marketed to Children

Ciprodex Ear Drops

Ciprodex is an ear drop that is used in children, especially children under the age of 3, the main people who get ear infections, that contains Cipro, a fluoroquinolone antibiotic, and Dexamethasone, a steroid. Let me list the ways in which this is HORRIFYING:

  1. Fluoroquinolones are dangerous drugs. Their adverse effects include DESTRUCTION of all connective tissue throughout the body. This includes tendons, ligaments, fascia and cartilage. Destroying the connective tissue of a growing child is a REALLY BAD IDEA. Fluoroquinolones also adversely effect the nervous systems – central, peripheral, and autonomic nervous systems. Destroying a child’s central nervous system, its BRAIN, is also a REALLY BAD IDEA. A child’s brain is not fully developed and to damage it with chemicals is unconscionable. Fluoroquinolones are so dangerous that many have been removed from the market due to serious adverse reactions and safety concerns. The fluoroquinolones that have been removed from the market include gatifloxacin, repafloxacin, temafloxacin,trovafloxacin and afloxacin. Cipro (ciprofloxacin) may be formulated in a way that makes it slightly less strong, or, if you’re feeling cynical, it may be formulated in a way that adverse effects tend to be delayed, and thus it is not perceived as being as dangerous as other, recalled, fluoroquinolones, but it’s still REALLY DANGEROUS. Hell, it messed me up pretty severely, and I was a strong and healthy 32 year old. I can only imagine what it would do to a child. I shudder at the thought.
  2. Fluoroquinolones should NEVER be co-administered with a steroid. They are contraindicated with steriods. Yet Bayer, in all its glory and brilliance, decided that it would be a good idea to combine a fluoroquinolone and a steroid in a single medication then market it to children. Awesome. Steroids weaken tendons, fluoroquinolones weaken tendons, putting them together is a toxic cocktail. Steroids also intensify the toxicity syndrome that is “Floxing.”
  3. Because Ciprodex is an ear drop, it doesn’t carry the same warnings as orally administered Cipro. I’m sure that a drug that goes into the digestive tract is metabolized differently than a drug that goes into the body via the ear. However, I am also sure that people can be floxed by ear and eye drops because I’ve talked to people who have been poisoned that way. To take the warning labels off of ear and eye drops is absurd. The drugs are still going into the body. Eyes and ears aren’t disconnected from the rest of the body just because they’re not directly connected to the digestive tract. I’m not asking anyone to believe in homeopathy or to go to a holistic physician, but I am saying that it is crazy to think that drugs that go into the ear and/or the eye don’t go into the body. Ears and eyes actually are part of the body, not separate floating entities completely disconnected from the rest of the being. Yet the FDA treats them this way and doesn’t demand the same warning labels on ear and eye drops. So parents are completely uninformed of the dangers of Ciprodex when they administer it to their children.
  4. Again Ciprodex is specifically marketed to children – what is wrong with these people? And what is wrong with the FDA? Children, the most inherently vulnerable people in our society, the people who are depending completely on others to take care of them, are being endangered at the least and permanently damaged at the worst, by pharmaceutical companies and a medical system that isn’t looking out for them. This is disgusting.

Here is the package insert for Ciprodex – http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=0ed518de-4ae1-43d1-84ff-26872d9e6a0f . Some things to note in the insert are:

  1. The amount of Cipro in it is low. This is good. Seriously, thank God.
  2. It is approved for use in patients 6 months of age and older. This is appalling.
  3. CIPRODEX® Otic is contraindicated in patients with a history of hypersensitivity to ciprofloxacin, to other quinolones, or to any of the components in this medication.” So, if your baby starts having seizures, you may want to discontinue use of this drug because it turns out that your child now has a history of hypersensitivity to Cipro. Too bad they don’t mention that an adverse reaction isn’t reversible. And how, other than poisoning their children, are parents supposed to know whether or not their child has a history of hypersensitivity to these drugs?
  4. Serious acute hypersensitivity reactions may require immediate emergency treatment.” This implies that there is a treatment. There isn’t. If your child has an adverse reaction to this drug and you take him or her to the emergency room, he or she will likely be pumped full of steroids which will make him or her worse. Then the child will have connective tissue and nervous system issues for a while, possibly for the rest of his or her life. But sure, tell your doctor immediately if your child experiences a hypersensitive reaction. They won’t be able to do anything about it, but they may realize that they poisoned your child and may avoid doing it again in the future.
  5. If the infection is not improved after one week of treatment, cultures should be obtained to guide further treatment.” Cultures should be obtained before the administration of any antibiotic, period. Fluoroquinolones should not be used as a first line of defense against verified bacteria, period.
  6. The systemic administration of quinolones, including ciprofloxacin at doses much higher than given or absorbed by the otic route, has led to lesions or erosions of the cartilage in weight-bearing joints and other signs of arthropathy in immature animals of various species.” Yup. And I wouldn’t trust that the amount absorbed by the otic route is too small, especially seeing as everyone’s tolerance for fluoroquinolones seems to be different. Some people die after 2 pills, others take 90 before they have a reaction. Besides, the people who are testing these drugs are the ones selling them. Don’t trust the bastards.
  7. Guinea pigs dosed in the middle ear with CIPRODEX® Otic for one month exhibited no drug-related structural or functional changes of the cochlear hair cells and no lesions in the ossicles.” Well, it’s nice to know that their ears looked okay. Could they run though? Could they still find their way through a puzzle (or do whatever cognitive things guinea pigs can do?) How did their brains look? How did their tendons look? You don’t know because you weren’t looking? Oh…. I see.
  8. It is very important to use the ear drops for as long as the doctor has instructed, even if the symptoms improve.” It is very important to stop using fluoroquinolones as soon as possible after you start having an adverse reaction. Even after stopping administration of them, the adverse reaction can continue. Since we’re talking about children, it’s really important that you stop giving your children drugs that are poisoning them. Discontinue use immediately.
  9. Specific drug interaction studies have not been conducted with CIPRODEX® Otic.” I’ll tell you that NSAIDs and steroids trigger adverse reactions.
  10. Ciprofloxacin and corticosteroids, as a class, appear in (breast) milk following oral administration.” This is bad.
  11. No clinically relevant changes in hearing function were observed in 69 pediatric patients (age 4 to 12 years) treated with CIPRODEX® Otic and tested for audiometric parameters.” Your child will still be able to hear. That’s good. He or she may even be able to hear constant ringing (tinnitus), a common effect of fluoroquinolone toxicity. That’s bad.
  12. All of the adverse events listed are things involving the ear. Of course, adverse effects on the ear should be noted when studying ear drops, but the rest of the subject should also be noted. Of the 937 babies poisoned by Ciprodex, how many suffered from subsequent tendon pain? How many had cartilage, tendons, ligaments or fascia that were mal-formed? How many of these children subsequently read at a normal level? How many of these children displayed symptoms of autism? Could they run? Could the jump? Could they think? Could they concentrate? Did they have GI problems? ALL of these things are problems associated with fluoroquinolone toxicity, and if none of these questions were asked, then the researchers were LOOKING AT THE WRONG THINGS. THEY WERE ASKING THE WRONG QUESTIONS AND THE SAFETY AND EFFICACY OF THIS DRUG HAS NOT BEEN ESTABLISHED PROPERLY.

Even if all of the 937 children who were part of this study (side-note – don’t put your children in drug studies, just don’t) were fine, (and I doubt that is the case), effects of fluoroquinolones appear to be cumulative. So, even if these children didn’t react to these drugs the first time they were administered, they may react horribly to them when they get a fluoroquinolone in the future. A ticking time-bomb in their little body has been triggered, and it may get set off by future fluoroquinolone use, steroid use, NSAID use, or maybe even vaccines. (I’m not trying to vilify vaccines any more than I’m trying to vilify ibuprofen, the culprit is the fluoroquinolone, not the triggering toxin.)

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Ciprodex and plain Cipro ear drops are given to children constantly. A very good friend of mine brought her then 9-month old daughter to an emergency services clinic with a suspected ear infection. The doctor never cultured the bacteria in her ear, he simply prescribed her some Cipro ear drops. Thankfully I was with my friend when she went to pick up the drops and she never filled the prescription (because I flipped out). The infection went away on its own.

The following was recently posted in a Facebook group that I belong to – “My 20 month old grandson is visiting from GA. He had a follow-up appointment at Vanderbilt for his ear tubes. The physician prescribed Ciprodex Otic Suspension for an ear infection. This is a combination of Cipro and corticosterod given via the ear. The insert does not disclose all the potential side effects. The insert states there are other potential risk and if you have concerns get additional information from your health care provider (which we know how that goes). After watching my wife go from a normal life to a life with disabilities…..I am concerned. In my personal research, children are at high risk of floxing. Does anyone know of floxing via the ear drop forms of quinolone antibiotics?”

Children are being given this poison every day. A child has probably been given a dose of Ciprodex in the amount of time that it took you to read this post. I hope and pray that they are okay.  

 

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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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Fixing Fluoroquinolone Toxicity is IMPORTANT!

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

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

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

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

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

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

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

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

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

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

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

 

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Fluoroquinolone Toxicity Featured in the Movie “The East”

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Here is a link to the trailer for The East – http://www.youtube.com/watch?v=gHpT9B7e7-Q#

I saw the movie “The East” on Saturday night.  About a third of it is about floxing.  It’s not about the pros and cons of fluoroquinolones – it’s about the damage that fluoroquinolones can do – floxing.  In case you think that I’m projecting and imagining things, here’s a link to a Huffington Post interview with Brit Marling, the lead actress and co-writer of “The East” saying that, indeed, the pharmaceuticals that the villainous Diaoxin (or Danoxin, or something like that. Please excuse the lack of memory – I am still a Floxie) is modeled after is fluoroquinolones – http://www.huffingtonpost.com/2013/05/30/brit-marling-the-east_n_3354665.html.  Fun fact – she got the idea for using fluoroquinolones as an example of a pharmaceutical drug with horrifying side effects from watching the PBS Frontline segment on fluroquinolones, Levaquin specifically – http://www.pbs.org/newshour/bb/health/jan-june11/antibiotics_06-16.html.  Go PBS, Frontline, Jenne Wilcox, John Fratti and all the other people involved in the Frontline piece! You rock!

And a HUGE THANK YOU to Brit Marling, Zal Batmanglij, Ellen Page, Fox Searchlight Pictures and everyone involved in making The East for highlighting fluoroquinolones and the damage that they do!  Thousands of people who have been harmed by these drugs will undoubtedly thank you.  You never know, maybe The East will inspire change in the production or distribution of fluoroquinolones and the film will save lives.  It’s entirely possible.  THANK YOU!  (Assuming that they are not actually going to read my blog, I intend to actually write them thank you notes.)

The movie is a work of fiction, quite obviously, and I’m sure that they didn’t want to get into legal trouble, so instead of calling the culprit drugs by their real names (Cipro, Levaquin, Avelox and Larium), they call it Diaoxin.  All of the symptoms of the fake Diaoxin are real symptoms of fluoroquinolone toxicity. They include:

  1. Central Nervous System Damage, specifically brain damage
  2. Tendon Damage
  3. Seizures
  4. Tremors
  5. Pain
  6. Rash

I’m sure that there were other symptoms too that were either implied more subtly or that I don’t remember.  Toby Kebbell, who played the character of Doc, did an excellent job at playing a Floxie, with the nuance that implied the many different ailments that Floxies, unfortunately, suffer from.

Some other things that they got right in the movie that should be noted are the delayed onset of symptoms, the fact that a lawsuit is impossible, or at least difficult, because the side-effects are listed on the package insert, that these drugs are being given to our armed forces in massive quantities, that these drugs are toted as a miracle cure for anthrax, that these drugs are commonly used in Africa (and other places in the world where malaria is common) to treat traveler’s diarrhea and malaria, etc.  Really, they did an awesome job at portraying as complete a picture as possible of fluoroquinolones and their toxicity.

I have seen a couple of reviews that criticize the movie as being unrealistic. One critic, Kyle Smith of the New York Post wrote, incredulously, “This drug, by the way, will within days (take your pick) cripple you, cause seizures and/or give you brain damage — yet somehow it earns billions in profits because no one but the terrorists has noticed all of this. (Shouldn’t their beef be with the FDA for approving the drug?)” – (http://www.nypost.com/p/entertainment/movies/the_east_lacks_direction_qLIX80cFcmWnXxs5prD5HL) Mr. Smith, if I didn’t live it, I wouldn’t believe it.  I wish that I was still a believer in the medical system, as you obviously are.  But this attitude of worshiping the medical system and insisting that it can’t be broken is, unfortunately, actually contributing to its destruction.  Listening to people’s stories, because they matter, and doing what is possible to fix the situation, will do more to save the medical system than the woefully underfunded and inept FDA is even remotely capable of.  And don’t for a second think that the real people who have really been effected by these real drugs don’t have a beef with the FDA. WE DO!

The East is a fairly mainstream movie that is getting generally good reviews.  People are going to see it. Most people will assume that the drug is entirely fake and that the symptoms are made up and too horrifying to believe.  I only wish that was the case.

I hope that The East will encourage public dialogue about fluoroquinolones and the harm that they can do.  Maybe that dialogue can keep people from being hurt in the future.  Let us hope.

 

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