Monthly Archives: August 2013

Permanent

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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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Fluoroquinolones 101

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I wrote the following article for Hormones Matter:

http://www.hormonesmatter.com/fluoroquinolones-101-antibiotics-to-avoid/

Thanks for reading it!

-Lisa

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

announcement

 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 – 

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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Adverse Reactions to Fluoroquinolone Antibiotics and Gardasil

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I wrote an article for another web site, Hormones Matter about what Gardasil and Fluoroquinolones have in common.  Here’s the article –

http://www.hormonesmatter.com/fluoroquinolone-antibiotics-gardasil/

Here are some tragic stories of how young women have been hurt by Gardasil –

http://www.hormonesmatter.com/life-of-alexis-wolf-post-gardasil/

http://www.hormonesmatter.com/five-years-after-gardasil/

http://www.hormonesmatter.com/before-and-after-gardasil/

http://www.hormonesmatter.com/day-in-the-life-post-gardasil/

These stories matter.  These young women deserve to be heard.  Please read their stories with an open mind and heart.

Thank you.

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Is Fluoroquinolone Toxicity Rare?

Rare picture

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

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

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

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

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

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

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

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

 

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Communicating With Doctors about Fluoroquinolone Toxicity

Listening Dr Picture

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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Fight Bayer. Fight Johnson & Johnson. Try to Fight With love.

Fight with Love Picture

It’s more important to be loving than it is to be right. It’s more important to be compassionate than it is to be right. It’s more important to be patient than it is to be right. It’s more important to have hope and faith than it is to be right.

I know these things on some level, but it’s hard to truly believe them.  It’s hard to put my ego in check and to let go of the need to be right. It’s hard to let go of control.  I want everyone in the world to know about the dangers of fluoroquinolone drugs and I want there to be systematic change to mitigate their danger – because I’m right.  And, of course, because poisoning innocent people with pharmaceuticals is wrong.  It’s a moral atrocity and it needs to stop.

But screaming at people about how they’re wrong when they assume that the drug companies aren’t poisoning them, that the FDA is protecting them, that their doctors know anything about the dangers of the drugs that they prescribe, doesn’t seem to work as well as I’d like it to.  People are resistant to being told what to do, think and believe.  They are resistant to being told what is right.

Maybe if we communicate with love as our motivation, as opposed to righteousness, we’ll get further.  For all important things that have been fought for, love was the motivation of those who achieved justice.  Not validation, not a need to be right – love.  Of course, those who fought for change and justice were right, and we all now know that they were right, but they didn’t go about fighting for their cause out of a need to stroke their own ego, they fought because it was important and they succeeded because they fought with love.

It’s definitely inflated to think of this struggle as analogous to fighting for civil rights.  We’re not freedom fighters – I realize that.  But it is important to fight the drug companies that are poisoning us.  It’s important to fight the pain and suffering that they are causing.  It’s important that we protect the children of the world from these drug companies who will maim them without batting an eye.  And it’s important that we go about the fight in the most effective way possible.  The great leaders who won important fights of great magnitude did so with love, not hate.  And with love they convinced the world of their righteousness.  The world changed because of their fighting, their righteousness, and ultimately, because of their love.

Exactly how we fight with love, and win, is something that I’m not sure of.  How do we convince people to not take fluoroquinolones themselves?  How do we shift their entire view of the medical system so that they are wary of the dangers of prescription drugs without trying to control them and convince them that we are right?  How do we fight without sounding (or being) angry or fearful or bitter?  How do we fight with love?  I don’t know.  But I think that it starts with a mind shift.  It starts with letting go of anger, fear, bitterness, control and the need to be right –  and letting love, compassion and understanding into our mind, heart and soul (singular – intentionally).  It starts with loving people unconditionally, even when they’re wrong, maybe especially when they’re wrong.  Because it is only when people are sure that they are loved, that they don’t need to be afraid, that they don’t need to control the situation, that they can let in love and truth, that they can be open to hearing what we have to say and they will be open to change.  When people are sure that they are loved, they will be open to stopping the atrocity that is this systematic disregard of human health and human worth in exchange for money, for corporate profits.  It’s a system that is broken, that is wrong.  It needs to be fixed.

Ironically, I hope that I’m right.  I hope that this fight can be won with love.  I hope that our society can shift away from valuing money, greed and corporate profits more than compassion, caring, safety, openness and love.  It’s a fight worth fighting, and it’s a fight worth winning.  Fighting the fight with love on our side is the best way to win it – I hope.
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