Tag Archives: Avelox side effect

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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