Monthly Archives: March 2015

FDA Testimony

Generic Fluoroquinolone Testimony FDA

Me practicing my speech. I won’t wear my fleece hoodie for the real thing. :p

I’m in Washington D.C. and will be testifying to the FDA at approximately 8:30 am EST on Friday March 27, 2015.  Rachel Brummert, President of the QVF will be testifying at approximately 3:50 pm EST the same day.

You can view our testimony through the webcast link noted in this FDA meeting announcement – http://www.fda.gov/Drugs/NewsEvents/ucm431265.htm

Rachel and I will do our best to tell stories of pain and suffering caused by fluoroquinolones, and to encourage the FDA to change the rules that are keeping people who are hurt by generic drugs from gaining recourse through the justice system.

A couple of notes – I wasn’t able to fit in all of the stories that were sent to me.  I had to cut many poignant stories because of time–I’m allowed to speak for 5 minutes.  Everyone who sent me your story – THANK YOU!  I wish that I could tell them all!

Also, this hearing is not about fluoroquinolones specifically.  It is about the fact that generic drug manufacturers cannot be held legally responsible for the damage done by their products.  Many people who have been hurt by various generic drugs will be testifying.  Generic drug manufacturers will also be testifying.  I can’t imagine what they’ll say though.  Are they actually going to argue that they shouldn’t be held responsible for the safety of their products?  Probably.  But if they can’t be held responsible for the damage done by their products, who will be held responsible?  The FDA?  Last I checked, suing government agencies wasn’t possible.  Generic drug manufacturers need to be held responsible for the damage caused by their drugs.  I hope that the FDA does what is in their power to make generic pharmaceutical companies liable for the drugs they make.

 

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Acknowledgement of Fluoroquinolone Antibiotic Toxicity

Acknowledement of Fluoroquinolone Toxicity

It is important to get acknowledgement from the doctors you are working with.

Though fluoroquinolone toxicity is not near as acknowledged as it should be, it’s not completely unheard of.  After all, most of the symptoms that people experience are listed on the warning labels.  Fluoroquinolone toxicity has also gotten some attention over the years, from Stephen Fried’s 1998 book, “Bitter Pills: Inside the Hazardous World of Legal Drugs,” to Nancy Edwards’ documentary, “Certain Adverse Events,” to the PBS Frontline special, “Certain Antibiotics Spur Widening Reports of Severe Side Effects,” to the dozen+ news stories about fluoroquinolone dangers done in the last month (linked to here).  Hundreds of media, blog, and peer-reviewed journal articles have also been written about the deleterious effects of fluoroquinolones (linked to here).

So, when a healthcare worker says, “I’ve never heard of reactions like that,” it makes me wonder, are they ignoring the warning labels, not paying attention to the media, or both?  (Yes, I know that my perspective is a bit biased and not everyone sees FQ toxicity everywhere, but it has been getting some genuine mainstream attention lately, and any doctor who prescribes these drugs should at least have his/her interest piqued by the stories and/or the existing journal articles.)

I suggest to everyone that they find doctors (or other health-care personnel) who, at the very least, acknowledge that fluoroquinolone toxicity is possible.  You can find a list of positively reviewed doctors here.

Fighting with your doctor for anything, much less a baseline of acknowledgement, is counterproductive to healing.  You don’t want to have that tension with the person who is supposed to be helping you.

Many Floxies have reported the relief they have felt when gaining acknowledgement of fluoroquinolone toxicity from a doctor.  In Diego’s Story, he noted that, “My doctors validating that LEVAQUIN did this to me” was one of the things that has helped him to heal.

Mike, a frequent commenter on this site, told me how great it was to hear from a doctor, “you are definitely floxed.”  And I appreciated hearing from him that his doctors told him that they read Floxie Hope.  🙂

Josh sent me this message:

“So, as I was telling you before, I had to schedule a root canal and was nervous about the procedure. When I went in to the dentists office, I filled everything out about my allergies to fluroquinolones and that I was under no circumstances to be exposed to them. Then, the doctor comes in and first thing she says is…

‘So I see you’re allergic to that poison that I would never dream of prescribing anyway.’

Can you imagine my relief? For about 5 minutes we talked about the adverse effects of quinolones and she assured me she would have never used them in the first place. As for the procedure itself, the first phase went very well (I have to get it finished in two weeks). I was given a lot of novacaine and she used eugenol (clove oil) to pack and seal the cavity temporarily and to bring down the swelling from a small infection in my tooth. I did experience a small flare (some mild muscle ache, nothing serious) for about 36-48 hours after the procedure. But 2 week out from the first phase, and 2 weeks until the second, my floxie symptoms are fine.

Please feel free to share the good news with the community that there ARE more and more medical professionals seeing things from the right perspective here! This woman is a very well respected endodontist in the Philadelphia area and she was just as adamant as I was about staying away from these drugs. Definitely encouraging news, and I felt like God really sent me her way to calm my nerves about the procedure and show that there are some doctors who know what’s up.”

It is noted regularly in The Fluoroquinolone Toxicity Group, a facebook support group for Floxies, that a doctor or other medical professional has acknowledged fluoroquinolone toxicity.  (Frustration with doctors not acknowledging fluoroquinolone toxicity is also noted often, and I suggest that everyone who experiences that try to find a new, more empathetic and educated doctor, if possible.)

Life is too short and precious to fight for the baseline of acknowledgement.

There is a lot of information about fluoroquinolone toxicity available.  Curiosity isn’t too much to ask for either.

The words, “I believe you,” are healing.  I hope that you all get that.  It’s more healing than any medication I can think of.

I’m really glad that more and more doctors are acknowledging fluoroquinolone toxicity, and how dangerous and destructive fluoroquinolones are.  To every doctor who acknowledges the pain and suffering of their patients going through fluoroquinolone toxicity, and especially to those doctors who don’t prescribe these drugs because of the devastation they bring – THANK YOU!

Acknowledgement, curiosity, knowledge, and caring will bring change.  When doctors bring those traits to their practice, they can change the lives of all of their patients.  The more doctors who see and acknowledge fluoroquinolone toxicity, and care about the patients who are suffering from it, the more quickly change will happen and the better the world will be.

 

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The Ciprofloxacin Song

This is adorable and sad at the same time.  I hope that Ashley has improved.  She posted this in 2010.

She’s right – FIGURE IT OUT, BAYER!  Why is the list of adverse effects getting longer and longer each year?  How many people have to suffer from adverse effects of these drugs before VERY serious consideration goes into whether or not they should be on the market?  What is the mechanism by which fluoroquinolones downgrade GABA-A receptors?  How much damage do fluoroquinolones do to human DNA – both mitochondrial and nuclear?  What are the consequences of damaging the DNA replication cycle for bacterial DNA within a person?  What are the consequences of damaging nuclear DNA of human cells?  What are the consequences of damaging mitochondrial DNA of human cells?  What are the long-term consequences of using fluoroquinolones?  What are the intergenerational consequences of using fluoroquinolones?  These questions aren’t too much for us to demand answers to.  Bayer has the means to answer these questions, SO GET ON IT, BAYER.  And OF COURSE they won’t do it voluntarily, SO MAKE THEM STUDY IT, FDA!

Anyhow, here is Ashley singing The Ciprofloxacin Song:

 

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The Floxie Hope Podcast Episode 11 – Diego

Diego Floxie Hope Podcast

I had the pleasure of interviewing Diego Vasquez for Episode 11 of The Floxie Hope Podcast.

Diego is thoughtful and wise.  His perspective on his floxing journey is poignant and beautiful.  I very much enjoyed speaking to Diego and he even brought me to tears during the interview.  I encourage all of you to listen to this podcast and share it with friends.  Diego has an amazing, uplifting, inspirational spirit.  You will be sure to be touched by this interview.

You can read about Diego’s Journey here – https://floxiehope.com/diegos-story-levaquin-side-effects/

You can listen to Diego’s Journey through these links –

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

http://www.floxiehopepodcast.com/episode-011-diego/

Diego mentions that he is being treated for peripheral neuropathy by The San Antonio Neuropathy Center.  You can learn about the Center from this video –

 

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Testifying for Justice for Victims of Generic Drugs

FDA testimony about ciprofloxacin, levofloxacin and moxifloxacin

Thousands of victims of generic ciprofloxacin, levofloxacin, moxifloxacin and ofloxacin have been unable to pursue legal recourse because of a couple of Supreme Court decisions that ruled that generic drug manufacturers cannot be held liable for harm caused by their products.

You can read more about these horrible Supreme Court decisions in this June, 2013 New York Times article, “In 5-4 Ruling, Justices Say Generic Makers Are Not Liable for Design of Drugs.

People are just as legitimately hurt by generic drugs as they are by name-brand drugs.  Arbitrarily taking justice away from a person because they were hurt by a generic drug is infuriating and wrong.

I have been given the opportunity to do something about this horribly unjust situation.

I have been invited by the American Association for Justice to speak at a Congressional Hearing on Capitol Hill on March 26th and to testify at a FDA hearing on March 27th regarding the lack of legal recourse for those hurt by generic pharmaceuticals.

This is a VERY exciting opportunity and I am honored to be able to tell Congress and the FDA about the harm that generic fluoroquinolones have done, and to encourage them to enact legislative changes that enable those who have been harmed by generic drugs to seek recourse and gain justice.

fluoroquinolone-lawsuit-banner-trulaw

Rachel Brummert, President of the Quinolone Vigilance Foundation, will also be presenting/testifying and you can learn more about what this opportunity will involve for both of us by reading the March 6th post on www.saferpills.org, “Executive Director Rachel Brummert speaking at Congressional Hearing and FDA Hearing.

It would be great if as many stories as possible about the pain caused by generic fluoroquinolones could be heard.  There are a couple of ways that you can share your story of pain caused by a generic fluoroquinolone, and the lack of justice available to you.

First, you can submit a comment to the FDA.  Instructions on how to do so can be found in the March 4th post on www.saferpills.org, “Generic Drug Victims: Share your story.”  I encourage EVERYONE to submit their story as a public comment.  Public comments really do make a difference!

Second, both Rachel and I would love to share some of your stories in our testimonies.  If you can please email either of us your stories, and what you would like us to say on your behalf to Congress and the FDA, we will appreciate it!  My email address is floxiehope@gmail.com and Rachel’s is Rachel@saferpills.org.  Rachel and I will coordinate so that we can tell as many stories as possible within the time allotted to us.  We can’t promise that we’ll be able to get to everyone’s story, and we will need to edit the stories for time and relevance, but we would love to share as many impactful stories as possible.  Please send either me or Rachel your stories / what you want us to say on your behalf, asap.  We need to get a drafts of what we are going to say to the American Association for Justice by the end of this week.  Sorry for the time crunch and thank you very much!

Thank you,

Lisa

 

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Pelvic Pain

Pelvic Pain and Ciprofloxacin

I’m going through a rough period health-wise.  I am not going to say that it’s a relapse of my FQ toxicity symptoms, because it may not be related to my floxing.  But I am going to say that I am in a lot of pain right now and I’m struggling.

I’ve been experiencing pelvic (toward the back door) pain for a while.  It started a few months ago but it was on and off and I was able to ignore it.  A few weeks ago it got so bad that it kept me up all night for a few nights.  Then, a week ago, it became constant.  Constant, horrible, tightness and spasming in my pelvis.  It’s excruciating.  Truly, it’s the most horrible pain I’ve ever experienced.  On a 1 to 10 pain scale, I’ll give the pain a 9.  I’ve never felt pain this horrible, but I’ve never passed a kidney stone or gotten severely burned, so I’ll reserve a 10 for those things.  It’s consuming pain though and it really, really, really sucks.

I am pretty sure that the cause of my pain is Levator Ani Syndrome.  Basically, it’s a spasming of the deep muscles in my pelvis.  All of my symptoms fit Levator Ani Syndrome.  My doctor is checking me for other possibilities, but because Levator Ani Syndrome is a diagnosis of elimination I suspect that she won’t find anything wrong with me.  (I hope there is nothing else wrong.  If this is a sign of colon cancer, or even IBS, both of those are very bad things.)

My pain may or may not have anything to do with fluoroquinolone toxicity.  It may be caused by neuropathy of my pudendal nerve, in which case, it may be caused by getting floxed 3 years ago.  But it also may be caused by something that has nothing to do with FQ toxicity – like maybe I was doing Pilates wrong and it caused tension and cramping in those muscles.  The causes of Levator Ani Syndrome, and most other causes of pelvic pain, are unknown, so it’s impossible to tell whether or not the pain that I’m in has to do with the damage that Cipro did to me.

I was fine.  I truly was fine.  I was doing really well and living a normal life.  This is a bit of a set-back and I’m feeling pretty lousy about it.

This really sucks.  Pain sucks.  There is nothing okay about constant, horrible pain in my pelvis.

I’m hoping that chiropractic, acupuncture, neurosculpting and mind-body alignment therapy will heal me and get rid of this pain entirely.  I’ve just started each of those things.  I really, really, really hope they help.

Until I can go through some sessions of chiropractic, acupuncture, neurosculpting and mind-body alignment therapy, I’ve had to figure out how to deal with the pain.  The following things have helped me through the pain:

1.  Kratom – This painkilling herb has been a life-saver.  It gets rid of my pain better than vicodin but without any side-effects.  I hate vicodin and other prescription painkillers.  Kratom has been wonderful and I am sorry for ever doubting its greatness.

2.  Corydalis – Corydalis isn’t as strong of a painkiller as kratom, but it has still helped immensely.  It’s on par with the OTC painkillers like ibuprofen and tylenol, but without some of the nasty effects of those drugs.

3.  Kava – I’m in a horrible cycle of pain-tension-anxiety-pain-tension-anxiety that spirals and makes every one of those things worse.  Kava helps to break that cycle.  It has been a life-saver.

4.  Sitting on a tennis ball – It helps to relax the muscles that are spasming.  It’s uncomfortable, but discomfort is better than pain.

5.  Massage – All of the muscles in my lower body have tensed up.  Getting a massage helped.

6.  Breathing exercises – Breathing deeply, into my pelvis, has helped.

7.  Cannabis based pain lotion – The lotion that I got is pretty low in both CBD and THC, but rubbing it on the affected area seems to help none-the-less.

8.  Hot baths – With epsom salt – they help.

I’ve tried tart cherry juice, herbal muscle relaxers, meditation and a few other things too.  They are good in their own right, but they haven’t been able to touch the pain that I’m currently dealing with.

Other than sitting on a tennis ball, the things that have helped me through this painful time may be able to help others through pain.  People have asked me what to do about pain and I’ve always said, “drink tart cherry juice and meditate.”  Now I know that sometimes that doesn’t cut it.  My pain was severe (and still is).  Painkilling herbs have helped.  I’m not a doctor and everyone’s situation is different, but kratom, corydalis, kava and the other things listed sure helped me a lot.

I don’t know how I would have gotten through this last week, or faced this next week, without kratom, kava and corydalis.  I am thankful for them.  But I don’t want to be on them long-term.  I want this pain to just go away.  I’m hoping that my multi-pronged alt-therapy approach helps.  It has to.  This current situation is not okay.

If anyone has any other suggestions as to how to get through this, I’d love to hear them.

And to all those who can empathize with my pain – I’m so sorry!  It sucks.  I hope that you find relief!

I hope that I can get through this quickly and get back to being hopeful, well and fully recovered.

 

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Request a Congressional Hearing

Congressional Hearing dangerous drugs

Please join me in requesting a Congressional Hearing about the damage that fluoroquinolone antibiotics have done.  Cipro, Levaquin, Avelox, Floxin and their generic counterparts have disabled people, ruined lives and even killed people.  The cellular damage done by fluoroquinolones is unacceptable.

When car companies make faulty vehicles that kill people, there are Congressional hearings.  But when pharmaceutical companies make drugs that kill and maim people the mantra of “all drugs have side-effects” is repeated over and over again, and no rectifying action is taken.  It’s time for that to change.

The amount of damage done by fluoroquinolones is ridiculous.  Fluoroquinolones damage mitochondria, lead to massive amounts of oxidative stress, destroy the microbiome, cause neurotransmitter imbalances, etc.  Each level of damage caused by fluoroquinolones is linked to chronic diseases including autoimmune diseases, neurodegenerative diseases and the “mysterious” diseases of modernity like fibromyalgia and ME/CFS.

Instructions on how to request a Congressional Hearing can be found HERE.  (If you have any trouble opening the link, please let me know via email – floxiehope@gmail.com.)

Thank you for taking the time to email the Representatives that can get a Congressional Hearing for fluoroquinolone toxicity on the agenda!

 

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