Monthly Archives: June 2013

Adverse Reactions to Fluoroquinolones are Like Earthquakes

Dealing with Fluoroquinolone Antibiotics Adverse Reactions

I first wrote this essay about 4 months post-floxing.  My perspective has changed a bit since I wrote it, but a lot of it still rings true –

I’ve come to think of bad fluoroquinalone reactions like earthquakes.  They’re both scary, the world as you know it shakes and destruction and tragedy can occur.  Like earthquakes, they also vary in severity.  Some are minor, like the August 23,2011 earthquake in Washington D.C. that caused little damage to infrastructure and no fatalities – but you can certainly be sure that it was scary to those who lived through it.  Some are major and devastating, like the January 12, 2010 earthquake in Haiti that left hundreds of thousands dead and destroyed billions of dollars of infrastructure.

Most of the stories that you read about on the internet about horrific fluoroquinalone interactions are Haiti-like in intensity.  Lives have been ruined by fluoroquinalones.  People are unable to walk, work, sleep, etc.  Some are in constant pain.  My heart goes out to those people.  Through no fault of their own, their life was shaken to its core, and, in many cases, their world came tumbling down around them.  I certainly don’t want to take anything away from them or the tragedy of their situation by mentioning that there are others out there who have more minor, D.C.-like, reactions.  However, I do want those who are new to researching fluoriquinalone toxicity on the internet and scared for their life that a more minor, non-devastating, reactions are possible.  I know that I needed to hear that when I first got sick.

You might be okay in a couple of months.  You might not.  I hope and pray that you are one of the people who recovers quickly and completely.  Know that it is possible and have hope.

I was lucky enough to have a D.C.-like reaction.  (June 2013 revision – I wrote this before I recognized a lot of my mental issues and before I went through some cycles of feeling pretty lousy.  I now think that I had a reaction that is more like the 1989 San Francisco earthquake.  Still scary, but San Fran has recovered, as have I.)  I don’t know that I’ll ever reach 100% of my pre-fluoroquinalone poisoning capacity.  I have lost some abilities that I may never gain back (my memory, flexibility, balance and immune system reactivity aren’t what they used to be), but I can deal with the level that I am at now.  I can still work, walk, interact with my loved ones, etc.  It is possible that fluoroquinalone toxicity did some damage to my system that I’m not seeing right now.  It’s possible that there’s a fissure in my infrastructure and that my world may come tumbling down around me at some later time as a result of the earthquake that was my bad reaction to fluoroquinalones.  I hope not, but it is possible.  Each day is better than the last though, so, at this point, I have no reason to think that I won’t be fully recovered 6-12 months after my initial reaction.  I hope so.

June, 2013 addition –

For those of you who have been shaken, whose world has been rocked and who are facing the rubble, now you have the chance to rebuild.  It is a chance – an opportunity.  You never asked to be knocked down and you certainly didn’t deserve it.  But since the earthquake happened, you can view the opportunity to rebuild as a gift.  You can make yourself amazing.  You can build skyscrapers and bridges and arches – you can shine and scream and let your greatness be known.  You can build a tiny little house in a meadow, ’cause you didn’t need all that crap in the first place.  You can build a safe house in the suburbs, where your family will be protected, ’cause you’ll never let an earthquake knock them down.  You can rebuild yourself to be awesome, and beautiful, because you are.

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Fluoroquinolone Toxicity Featured in the Movie “The East”

The-East-Movie-2013

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

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

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

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

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

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

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

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

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

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

 

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Dancing After Cipro Damaged my Tendons

Living after Cipro Poisoning

I danced last night.  For two hours I jumped, spun, flailed, shook and even attempted to shimmy.  It was great/beautiful/amazing/special/fun!

On Thursday nights I go to an ecstatic dance thing called Rhythm Sanctuary (www.rhythmsanctuary.com).  I typically call it Hippy Dance Class or Hippy Church.  In the sharing circle last night – yup, sharing circle – a girl said that it was hippy with a side of hippy.  True.  But if it’s hippy, then call me a hippy, ‘cause it’s great – pretty much my favorite thing in the world right now.

Other than being hippyish, Rhythm Sanctuary is difficult to describe, but I’ll try.  It’s a dance party with no alcohol and no talking.  Electronic music is played.  People dance however they want.  Some people are excellent dancers, but most aren’t, and everyone dances together in whatever style they want.  Most people dance alone/as part of the big group, but some people dance specifically with another person.  There are people of all ages in attendance.  Everyone is welcome.

When I first started going to Rhythm Sanctuary, about 4 months ago – 14 months post-floxing, I could only sway my hips and dance gingerly, with care.  The tendons in my knees and my achilles’ would get inflamed, and I would lose energy mid-way through the dance.  Rhythm Sanctuary is a free-for-all though, so I was able to walk around, sit, lay down, whatever I needed to do to take care of myself, while I was there.

After about a month of dancing gingerly at Rhythm Sanctuary, and a month of overall healing, I started to jump around and flail (I’m not in the good dancer category) and really dance – with all my heart.  My achilles’ didn’t rupture.  My knees held up.  I could do it…. I could dance, and if felt great!

Dancing is healing for me.  It is something that brings joy and healing to my body and soul.  Moving to the rhythm of amazing beats, with other joyful people, is beautiful, and I find it to be good for my body and spirit.

The leader of Rhythm Sanctuary, Ahva, refers to the dance as medicine.  It has been medicinal for me.  My health has improved while I’ve been dancing, and I think that it’s because of the dancing, the amazing energy in the room (you can feel the joy, passion, sometimes sadness, beauty, and always love permeating the dance hall) the music (maybe the music is shaking our cells in a healing way – probably not a scientifically verifiable theory, but I like it none the less) and the people.  Art is healing.  Dancing is my healing art.  It’s my favorite medicine.

I got some great hugs last night.  I suggest that you all go someplace with hippies.  They’ll give you hugs.  Hugs are definitely healing.

And dance.  When you can.  With love.  xoxoxoxo

 

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What is Fluoroquinolone Toxicity???

Cipro Molecular Structure

What is the pathology and what is the cause of floxing???  I’ve jumbled up theories of cause and pathology in the following list:

Is it an autoimmune disease/reaction?  ‘Cause that makes sense.   Many of the symptoms are similar to those of known autoimmune diseases like Rheumatoid Arthritis, Multiple Sclerosis or Lupus.  The connective tissue, tendons, ligaments, fascia, etc. of Floxies is being attacked.  If it’s being attacked by the immune system, well, that’s an autoimmune disease.  Which leads me to – AN ANTIBIOTIC TRIGGERED AN AUTO-IMMUNE REACTION – ARE YOU EFFING SERIOUS???  But it may not be….

Is it a serum sickness?  ‘Cause that makes sense.   My uncle who is an orthopedic surgeon thinks that it is.  This article describes floxing as a serum sickness – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC171716/

Is it a toxic reaction?  ‘Cause that makes sense.  A drug is a toxin, right?  So if we get it out of our systems, we’ll be fine, right?  Unfortunately, this, the simplest of explanations, is the easiest to dismiss.  If it was a toxic reaction, people wouldn’t have delayed reactions.  When I went to the doctor, two weeks after I finished taking Cipro, and asked her if my symptoms had anything to do with the Cipro, she said no because (she didn’t know any better and) the Cipro should have been out of my system by then.  She’s probably right.  The Cipro had been metabolized.  But while it was there, it did something horrible to every cell in my body.  Maybe there are lingering pockets of toxins that we can just clean up and be cured…. But I don’t think so.

Is it an inhibition of the CYP1A2 enzyme?  ‘Cause that makes sense.  Fluoroquinolones inhibit the CYP1A2 enzyme in the liver, according to http://www.pharmacytimes.com/publications/issue/2007/2007-11/2007-11-8279.  Cures include smoking tobacco and eating broccoli.  You don’t want to start smoking, I wouldn’t/don’t…. But if it will enable you to walk, well, I can’t blame you.

Is it mitochondrial damage?  The general consensus among Floxies is that their mitochondria is damaged.  Another Floxie blog goes into this theory – http://www.floxedbylevaquin.com/p/mitochondrial-disease.html.  This may be an entirely false line of logic seeing as cellular energy and how energetic you feel are different, but mitochondrial damage may explain the exhaustion that Floxies feel.  Harvard researchers seem to be on this track – http://www.worldpharmanews.com/research/2481-dodging-antibiotic-side-effects

Is it dna damage?  Fluoroquinolones “prevent bacterial DNA from unwinding and duplicating” (according to http://en.wikipedia.org/wiki/Fluoroquinolone).  Do they also prevent our DNA from unwinding and duplicating?

Is it an inability to absorb magnesium and other minerals?  Given that magnesium and other mineral supplements are the only supplements that seem to reliably help most Floxies, and that many floxing symptoms are similar to that of magnesium deficiency this explanation seems pretty likely.  Unfortunately, popping a magnesium pill every day doesn’t seem to fix the problem.  Also, according to “Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population” by Doctors Hall, Finnoff and Smith (do I have to site it correctly on a blog?), “Results of studies have shown that magnesium-deficient diets are capable of producing cartilage changes similar to that caused by fluoroquinolone exposure in both canines and rats, and dietary magnesium supplementation was able to reduce the histologic changes in rats exposed to fluoroquinolones.”  More information regarding the relationship between floxing and magnesium can be found in the article which can be found in Musculoskeletal Medicine, Vol. 3, pages 132-142, February 2011, published by the American Academy of Physical Medicine and Rehabilitation.  Email me for a copy. Also, here is a list of drugs that deplete magnesium from the body.  Cipro and Levquin are on it –  http://www.jigsawhealth.com/resources/drug-muggers-suzy-cohen-magnesium

Is it a methylation issue / MTHFR gene mutation?  A lot of Floxies have been tested for the MTHFR gene mutation and all who have tested and reported back have had the mutation.  I honestly don’t know enough about this line of thinking to comment much on it.  Here’s some info – http://www.methyl-life.com/index.html.

Is it something to do with blood? Iron, chlorophyll and beets are all supposed to help production of red blood cells, and those are the things that help me the most.  Maybe our blood doesn’t carry oxygen as well as it did.  Why/how did fluoroquinolones effect my blood’s ability to carry oxygen?  I have no idea.  I don’t even know that the above statement is true.  I do know that blood tonics such as iron, chlorophyll and beets help me though.

Is it something that inhibits our absorbtion of uridine?  Beets make me feel better, and I’ve been having Brewer’s Yeast daily for about a year.  Maybe the uridine in those things is helpful.  http://www.spanimax.com/index.php/omega-3-and-uridine

Is it something hormonal?  I know that my symptoms get significantly worse just before my period and during my period.  Hormones have some effect on floxing – I just don’t know what it is.  Hormones may explain cycling too.

Is it something going hay-wire in our Gaba receptors?  Dr. Flockhart, a doctor who has seen many Floxies, believes that floxing causes interference with the Gaba receptors throughout our brains and bodies.

Is a neurotoxin produced by the damaged/bad bacteria after exposure to fluoroquinolones (or the die-off of the “good” bacteria that keep the bad ones in check)?  There are several interesting things noted in Beyond Antibiotics by Michael Schmidt.  Dr. Schmidt points out that both tartaric acid and tricarbalyte are noxious compounds produced by bad gut bacteria when good gut bacteria in the gut are not available to keep them in check.  Tartaric acid “is a known poison of the energy system of mitochondria,” and tricarbalyte “binds to magnesium and may reduce the availability of dietary magnesium.”  (pages 28-29) Dr. Schmidt also says that antibiotics cause the production of clostridiam which is a known neurotoxin producing organism (p. 44). And, on page 47 he says, “Whever a CPY enzyme is blocked or slowed, its ability to detoxify other drugs can be impaired.”  My thought on this is that the fluoroquinolones slowed our CPY enzymes then the NSAIDs, steroids, other toxins in our system, did other damage – and maybe that’s why each of us have so many different symptoms.

Also, John Travis reported in Science News (July 2003;164) that research performed by John F. Prescott found that certain antibiotics, such as the fluoroquinolones, the class of antibiotics that includes the name-brands and generic brands of Levaquin[R], Cipro[R], Tequin[R], and Avelox[R], actually are known to trigger a type of virus called bacteriophages (viruses that can infect bacteria) to change the genetic sequencing of the bacteria, causing the bacterium they have infected to start producing toxins. These viruses can act as genetic delivery vans, invading bacteria, such as spirochetes, often lying dormant, until activated by a change in the host (your body’s) environment. Once activated, these viruses insert their toxin-generating genes into the bacterial chromosomes. These viruses can turn basically harmless bacterium into killers through this genetic sequencing of toxins (Travis 2003).  Not only are these toxins released through bacteria die-off and not only can antibiotics actually increase the production of the toxins, but these viruses can cause the bacteria to rupture, spilling their toxins into the body (Waldor 2004).  http://www.benbrew.com/lb/lyme5.pdf

Did we have something in our system that “supercharged” the fluoroquinolone antibiotics?  Maybe we had trace amounts of silver in our system that made the FQs many times stronger – http://www.scientificamerican.com/article.cfm?id=silver-makes-antibiotics-thousands-of-times-more-effective.  Or, maybe we had some grapefruit juice in our system and it produced that enzyme that kept us from metabolizing the drugs.

FQs are topoisomerase inhibitors and that the primary cause of our issues is likely DNA and mtDNA damage from massive transcription errors as a result of the chemical inhibition of proper cellular replication. That is the effect of a topoisomerase inhibitor, after all. They simply affect both prokaryotic AND eukaryotic DNA, despite what the literature states.  Recent research has proven this about FQs. That is why you get the delayed effect. It takes weeks to months for those damaged cells to replicate.
http://biology.about.com/od/cellanatomy/a/eukaryprokarycells.htm

Further, “FQs are currently being investigated for their chemotherapeutic properties. This research would not be possible if FQs didn’t affect eukaryotic cells.  FQs damage DNA by via inhibition of topoisomerase enzymes. This causes the DNA to not unwind, replicate, and then rewind back into the double helix structure correctly. This introduces transcription errors into the DNA itself. The body then recognizes these errors and attacks. This process should be over in a relatively short period of time. Unfortunately, I also think FQs alter the DNA of long lasting immune cells (killler B and T cells for example) which normally remain in the body for years or decades. I think once this happens, the body then develops the autoimmune issues. Also, it is a fact that once you cause the DNA and mtDNA damage, then you see a huge spike in the amount of ROS in the body. There was a study done of Indian men given Cipro for UTIs that proved that. What would you expect the body to do if you damage the ability of the mito to efficiently turn food into energy? You would get an increase in the amount of reactive oxygen species causing a cascade of cellular damage.  Also, it is well known that the human body would simply fall apart without many types of bacteria. Now what if you introduce a chemical into the body that destroys and/or causes mutations in the DNA of said bacteria? I think all of what I previously stated combines to cause our issues.”

Did Fluoroquinolones cause us to become Histamine Intolerant or to have excess histamine?  Here are the ways that this makes sense.  First, drugs can inhibit the enzymes that keep histamine levels in check.  Fluoroquinolones aren’t listed as drugs that can do so, but NSAIDs, one category of drugs that can trigger a reaction to Fluoroquinolones, are – http://healthypixels.com/?p=1044.  Second, “Histamine is versatile–it helps to regulate body functions as diverse as digestion, sleep, sexual function, blood pressure, and brain function.  How does this one molecule do so many different things?  The secret to histamine’s multi-faceted nature lies in which type of cell and which type of receptor it binds to.  For example, when histamine binds to special cells in the stomach called parietal cells, they respond by producing stomach acid.  When histamine binds to receptors on the surface of blood vessel cells, blood vessels dilate, dropping blood pressure. Small vessels called capillaries become leaky and fluids ooze out of them, which can lead to runny nose, watery eyes, and puffy skin/fluid retention.  In the brain, histamine acts as a neurotransmitter, carrying chemical messages between nerve cells.” (from http://diagnosisdiet.com/histamine-intolerance/)  Also, estrogen and histamine reinforce each other, which may explain why menstruating women have flare-ups of their floxing symptoms when they experience PMS.  BUT, histamine doesn’t adequately explain a lot of other things.  First, Fluoroquinolone Toxicity is NOT an allergic reaction, at least not in the sense that we think of allergic reactions, with an immediate, severe reaction that can include anaphylactic shock and ceasing of the reaction when exposure to the allergen has stopped and an antihistamine is administered.  Adverse reactions to fluoroquinolones can begin weeks or even months after exposure to the drug has stopped; after it SHOULD be fully metabolized and out of the body.  Also, antihistamine drugs like Benadryl, Claratin and Zyrtek don’t seem to do much for those who are suffering from Fluoroquinolone Toxicity.

Do fluoroquinolones damage the myelin sheath that protects nerves?  Fluoroquinolones damage or disrupt the Central Nervous System, the Peripheral Nervous System and the Autonomic Nervous System.  This leads me to believe that they damage or disrupt nerves over-all.  Perhaps the myelin sheath that protects nerves is attacked by fluoroquinolones.

Do fluoroquinolones cause a massive amount of oxidative stress on the body and does that oxidative stress cause the damage?  A 2011 study published in the Journal of Young Pharmacists found that, “There is significant and gradual elevation of lipid peroxide levels in patients on ciprofloxacin and levofloxacin.”  They also found that “There was substantial depletion in both SOD (superoxide dismutase, “a free radical scavenging enzyme”) and glutathione levels” and that “On the 5th day of treatment, plasma antioxidant status decreased by 77.6%, 50.5% (and) 7.56% for ciprofloxacin, levofloxacin and gatifloxacin respectively.” The study also notes that administration of fluoroquinolones leads to a marked increase in the formation of Reactive Oxygen Species (ROS) and that “reactive free radicals overwhelms the antioxidant defence, lipid peroxidation of the cell membrane occurs. This causes disturbances in cell integrity leading to cell damage/death.”

All of these theories make sense and it would be really nice to know which one is correct. Basically, what the hell is going on in our bodies?  Why are we falling apart?  Why do some people get better and others don’t?  Why do FQs effect some people and not others?  It’s all so confusing and frustrating.  If some research on where to even start could be done… that would be helpful.

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