Tag Archives: Avelox side effect

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

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Post on Hormones Matter –

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

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

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

2.  Athletes.

3.  People on steroids (corticosteroids).

4.  People who need to take NSAIDs regularly.

5.  Immunocompromised Individuals.

6.  People with Mitochondrial Dysfunction.

7.  Children.

 

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Forgetting the Pain of Floxing

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

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

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

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

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

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

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

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

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

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

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

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

 

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

I’m feeling a little overwhelmed.

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

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

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

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

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

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

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

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

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

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

Thank you all for your patience!

All my best,

Lisa

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

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A Return to Hope

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

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

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

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

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

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

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

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

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

 

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Saving the Life of a Floxie

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

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

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

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

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

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

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

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

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

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

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

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

Thank you.

 

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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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Dear Pharmacists Handing Out Prescriptions for Fluoroquinolones

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Perhaps I’m failing to see some grey area, but here are the options that I see for Pharmacists. Either they don’t know how fluoroquinolones work and how they are dangerous, and thus they are bad at their job, or they knowingly give dangerous drugs to children, and thus have the moral compass of invertebrates, or they think that all drugs have side effects and that side effects are rare, which is a fairly poor moral position even if it is fact, or they feel utterly unempowered, which is a poor reason for letting people get hurt under their watch. I am open to hearing other options.

Anyhow, this is an open letter to Pharmacists who fill prescriptions for fluoroquinolones.

http://www.hormonesmatter.com/open-letter-pharmacists-prescribing-fluoroquinolones-know/

 

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Lessons Learned from Getting Floxed

1980-08 #15 - Version 2

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

I’ve always wanted:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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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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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 – 

 

 

Communicating With Doctors about Fluoroquinolone Toxicity

As soon as I realized that a pharmaceutical had hurt me and that there was nothing that doctors could do to cure or fix me, I stopped going to doctors. I figured that they could hurt me and they couldn’t help me, so I wasn’t going to consult with them any more. I was angry with the system that hurt me. I was angry with the doctors that prescribed these drugs. I was angry with the doctors who told me that my symptoms couldn’t possibly be from the Cipro that I took. I figured that they were wrong (they were, the Cipro caused all of my problems), that they didn’t know anything useful (I don’t know because I didn’t ask), and I opted out of the system.

I don’t think that my reaction was entirely unreasonable. The anger and bitterness probably weren’t helpful, but I don’t think that they were unwarranted. It made me pretty angry to get seriously damaged by a pharmaceutical then dismissed by doctors when I asked about the possibility that the Cipro was what was making my body go hay-wire (it was). Opting out of the system that caused me harm seemed like a fairly reasonable and rational decision, especially since alternative medicine, acupuncture and supplements, were helping me.

But now I’m starting to see that I didn’t help the system at all by opting out of it. None of my doctors have any clue what Cipro did to me. They have no idea that it caused me to barely be able to walk for several months. They have no idea that it sucked out all my energy so that I could barely stay awake through the day. They have no idea that it caused me to lose important parts of my mind – my memory, my reading comprehension, my ability to connect with other people, my ability to communicate verbally, etc. They have no idea that Cipro caused a syndrome in me that did severe damage to all systems of my body. They have no idea because I didn’t tell them.

So I can’t really blame them for not knowing, for not noticing my pain. I can’t blame them for not doing something about the travesty that is the system that let fluoroquinolones be a first line of defense for minor infections, if they don’t know about the consequences of their actions. I can’t blame them for incorrectly assessing the frequency and severity of adverse reactions to fluoroquinolones if a sizable portion of the population who has an adverse reaction to a fluoroquinolone does exactly what I did, opt out of the system and fail to communicate with them. They have no idea. And that’s partly my fault.

Even if I had felt inclined to continue to go to M.D.s for treatment, I suspect that it would have been an uphill battle. The system isn’t set up to recognize, or to treat, issues like Fluoroquinolone Toxicity Syndrome / Floxing. First off, “Floxing,” or even Fluoroquinolone Toxicity Syndrome, isn’t even in the doctors’ handbook of recognized diseases/syndromes/things. So, if it doesn’t have a NAME, it’s not going to be recognized. Second, it would have been a waste of everyone’s time and energy for me to keep going back to the doctor with each new symptom, and new ones kept popping up for a few months, just to let them know, when there is nothing that they could do about any of them. The Western medical system is set up to name and fix things. Naming diseases and fixing people is important, and I want both, but when neither are available really bad things tend to be done – labeling patients as difficult or crazy, or, worse, throwing random treatments at them with the hope that they’ll get better – though sometimes they get worse as a result of the treatments. I didn’t want either of those things so I didn’t go back to my doctor. Seeing as I’m largely recovered, I think that my strategy was a good one for my health. However, it kept doctors from noting what was going on with me and thus, it didn’t get put on their radar that change is necessary.

I should tell them. I should tell them my story. We should all tell our doctors our stories. Not to get an answer from them. They don’t have the answers. We should tell them just so they know. So that they can know about the devastating effects of the drugs that they prescribe. If they know, maybe they’ll change their actions. Maybe they won’t prescribe fluoroquinolones in inappropriate situations. Maybe they’ll recognize the symptoms of Fluoroquinolone Toxicity Syndrome / Floxing in someone else so they will at least know how to avoid doing more harm to that person (they can avoid NSAIDs, steroids and, of course, other fluorouqinolones in the future for that person).

As for how to do this, I think that Dr. Rob has some valuable advice in this post – http://www.prohealth.com/library/showarticle.cfm?libid=18247 . Approach the good ones like they’re humans, they are, and leave the jerks behind (they’re humans too, just not humans that you should deal with).

So, it’s now on my to-do list to respectfully and kindly talk to my doctor about what I went through and how she may avoid putting another person through similar pain. I wonder if Kaiser will waive the co-pay for an informational session where the information goes from patient to doctor. I doubt it. It’s worth asking though.

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