Monthly Archives: September 2014

Keep Banging that Drum

Margaret Mead Quote

I wrote a post last night that I was frustrated with upon completion. It’s not that it isn’t good. It is good, and it will be published – probably next week – on Hormones Matter. It’s that I was saying a lot of the same stuff that I’ve said before – Fluoroquinolones are dangerous drugs that damage mitochondria, lead to massive amounts of oxidative stress and contribute to all sorts of multi-symptom, chronic, mysterious diseases. I’ve said it before. I’ve said it in multiple ways. I’ve been as loud and as clear as I can be.

I was annoyed with myself because I don’t particularly want to be repetitive.

I wonder though, other than annoying myself, is repetition really a problem? For most people, it takes multiple times of hearing a message for it to sink in.

The first time they hear about the dangers of fluoroquinolones they resist the message. They think something along the lines of, “What are you talking about???? Antibiotics don’t do that. There’s no way cipro, levaquin or avelox hurts people like that. You must be mistaken.”

The second time they hear about the dangers of fluoroquinolones they start to make sense of what you are telling them. They think something along the lines of, “I’ve heard about how destruction of the microbiome wreaks havoc on many areas of human health – does that have anything to do with this?”

The third time they hear it, they may start to make a connection between what you say and something that they’ve seen or heard. They may think or say something like, “My friend’s son had something similar happen to him, I wonder if he’s taken one of those drugs.”

The fourth time they hear it, they start to understand. They may think or say something like, “Mitochondria are the energy centers of cells. OF COURSE when you damage mitochondria with fluoroquinolones the result is a shut-down of multiple bodily systems and chronic disease. And did you know that mitochondria are ancient descendents of bacteria? The damage done to human mitochondria is the same as the damage done to bacteria – it totally makes sense!”

The fifth time they hear it, they think that fluoroquinolone toxicity is common knowledge and common sense. They say things like, “Everyone knows that ciprofloxacin is a dangerous drug that should only be used in life or death situations.” Or, “Mito-toxic drugs are leading to all sorts of chronic illnesses – I wouldn’t touch a fluoroquinolone with a ten-foot pole.”

At that point, you can consider them to be won over.

Changing minds. Informing people. Changing the world. Those things are what all this screaming is about. I don’t spend 40+ hours per week researching and writing about the dangers of fluoroquinolones because I don’t have anything else going on in my life (I do have a job, a few hobbies and friends). I spend time and energy working on this BECAUSE IT’S IMPORTANT! People are being needlessly hurt by these drugs that have been shown, over and over again, to be damaging to human cells. It’s something that is worth screaming about. So I’ll scream, over and over again, until people hear me.

To change the world, perhaps a bit of repetition is needed. Annoying myself is a necessary sacrifice. I’m pretty sure I can do that.

Help in spreading the word about how dangerous fluoroquinolones – cipro/ciprofloxacin, levaquin/levofloxacin, avelox/moxifloxacin, floxin/ofloxacin – are, is greatly appreciated! I know that it feels like your friends and family members think that you’re a kook when they’re in the phase of disbelief and resistance. But if you keep letting them know about how dangerous fluoroquinolones are, and how cipro, levaquin and/or avelox hurt you, eventually they’ll come around. Eventually they’ll believe you. Because you’re telling the truth. You have plenty of scientific studies on your side.

Keep screaming. I’ll keep writing. Eventually, we will get this changed.

Never doubt that a small group of committed people can change the world. Indeed it is the only thing that ever has.”—Margaret Mead

 

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Lyme Disease and Fluoroquinolone Antibiotics

Lyme Disease Ribbon

To my dear friends with chronic Lyme Disease,

I am so sorry for all that you are going through!  The pain, the exhaustion, the fear, the frustration – all of it.  My heart goes out to all of you!

I know that treatment options are a touchy topic, and that antibiotics are often a necessary part of dealing with Lyme Disease.  However, I’m going to jump right into a volatile sea and say, PLEASE, please, please be careful with antibiotics, and know that they are not all created equally.  Fluoroquinolone antibiotics – Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin – are chemo drugs that can do absurd amounts of harm.  I would hate for you to have to deal with two chronic illnesses at once – chronic Lyme and Fluoroquinolone Toxicity Syndrome.  Both are horrible.

Words of Wisdom from a Floxie with Lyme

A few comments on this site, from people who are dealing with both chronic Lyme Disease and Fluoroquinolone Toxicity, are more illustrative than anything I can say.  Here is a comment from my dear friend Catherine, who has been dealing with Lyme Disease for 18 years and Fluoroquinolone Toxicity for 2 years:

My situation is complicated, because I have been wheelchair bound with lyme and co infections for 18 years. I have had about 400 doses of Cipro and 12 days of avelox. I actually got quite a lot better on the cipro for about 4 years, before deteriorating again. Unfortunately, I didn’t realize it was the cipro – because I had done well on it before, it never occurred to me that it was now harming me – and carried on taking it for a year or two after I was first floxed. I then took nearly two weeks of avelox which finished me off, and I have now been bedbound for the last 18 months. I only made the connection between FQs and my health 12 months ago, when I took my last avelox.

I have had massive CNS and PN symptoms.  Over 100 symptoms in all. Some digestive issues too. By Christmas last year I felt that I had stabilized, but have recently developed new symptoms of dry eyes and receding gums.

Other aspects have improved – anxiety and panic attacks have lessened somewhat, and most nights I get 6 or 7 hours solid sleep.

Obviously, I’ve got a lot of damage to repair, and a long road ahead. This summer I have managed a few trips out in the car, which is more than I could do last summer. I have two young children, so I have to keep going for them!

She added, in a different comment on another conversation:

I had chronic borrelia and rickettsia for years before I began antibiotics. I then took FQs for years, and did well for a while. But at some point (I can’t be sure exactly when) I stopped doing so well and felt I was no longer responding – not just to FQs but to all the other antibiotics I was taking. And so the doctor gave me different and stronger FQs until eventually I became totally incapacitated and finally made the connection between FQs and floxing etc. I still don’t understand why the rickettsia/lyme now seems untouchable by any antibiotic. I would have thought after nearly 10 years of FQs I would have no infection left, but it’s worse and more virulent than ever. I can only guess that the FQs have effected a change in the rickettsia bugs themselves.

Tolerance Thresholds for Fluoroquinolones

Many people have suggested that fluoroquinolones bring out latent Lyme Disease.  I don’t know if this theory is true or not, as there haven’t been any studies (that I know of) trying to prove that hypothesis.

What has been shown to be true, however, is that fluoroquinolone antibiotics severely damage cells.  The parts of cells that are most damaged by fluoroquinolones are the mitochondria.  Mitochondrial damage is tricky in that both delayed adverse reactions, and tolerance thresholds are features of drug induced mitochondrial damage.  Thus, as Catherine’s comments illustrate, a drug that was once well tolerated can harm you the next time you have it.  (More info about tolerance thresholds for mitochondria damaging drugs can be found here – http://www.hormonesmatter.com/fluoroquinolone-time-bomb-mitochondria-damage/.)

Everyone’s tolerance threshold for fluoroquinolones is different.  Some people develop Fluoroquinolone Toxicity Syndrome after taking one pill.  Other people can handle hundreds of pills before their lifetime threshold is reached.  After an individual’s threshold is crossed though – the multi-symptom, chronic illness of Fluoroquinolone Toxicity results.

Delayed adverse reactions make it so that, often, people don’t even realize that they’ve crossed their tolerance threshold for fluoroquinolones until they have taken too many pills and the bomb in their body has gone off.  It’s Russian Roulette – but you can pull the trigger and release more and more bullets after the one that starts the reaction goes off – and each additional bullet does additional damage.

The symptoms of Fluoroquinolone Toxicity Syndrome are very similar to the symptoms of chronic Lyme Disease – pain, fatigue (um… bedridden exhaustion is more apt), insomnia, aching joints and muscles, decreased cognitive abilities, anxiety, depression and other psychiatric problems, etc.  The similarities between the two make it difficult to distinguish one from another.  They’re both real and they’re not mutually exclusive.  Some people even surmise that they’re related (but, like I mentioned above, I’m not sure about that).

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We’re in This Together

Humans like to break things into categories.  It helps us to understand them.  But, rather than attempting to convince you that your symptoms are from FQ toxicity, or listening to arguments that I might have latent Lyme, may I suggest that we all listen to Rene’s words of wisdom (also from a comment on www.floxiehope.com – Rene has also dealt with both Lyme and fluoroquinolone toxicity) :

Be careful about getting married to the disease label: “Look at the systems involved.” The massive amounts of data that I have combed through, during the years of illness, (before I was retested & given the diagnosis of Lyme), unveiled the commonality of all these illness or chronic conditions. If you have Lyme, MS, Fibromyalgia, Chemical Sensitives, Flouroquinolone injuries, Cancer it is a cellular issue of detoxification and efficiently utilizing the bio nutrients, the raw material we are made up of that send those signals & then receive the messages. The terrain is everything, which is why everything we eat and absorb is signally the terrain. The beliefs we have, what we covet and worship. How to improve the terrain and the function of these systems. Send the right signals and receive the right signals.

She also wrote:

the most beneficial & healing things you can do for Lyme are tantamount to doing much of what Fluoroquinolone injured do.

I know that for FQ toxicity, there is no one single “magic bullet” cure, but that many different things help people.  Some people are helped by a clean and healthy diet full of vitamins and minerals (Douglas recovered with the help of a healthy diet), some are helped by glutathione injections and liver cleanses (Richard was), Some are helped by antioxidant and mineral supplements (Ruth has some excellent antioxidant supplement advice), some are helped by alternative medicine (my acupuncturist helped me a lot) and most are helped by a combination of approaches.  All of the approaches are holistic and affect multiple systems.  Multiple systems with multiple negative feedback loops are broken by fluoroquinolones, and by Lyme spirochetes.  Systems break down with both diseases – and those broken systems break other systems.  The negative feedback loops are complex and difficult to fix.  But I thoroughly believe that the innate positive feedback loops are stronger than the negative feedback loops.  I hope that this belief is true.

All of us “spoonies” with under-recognized, systemic, often chronic illnesses have more in common than we don’t.  I hope that the stories of hope and healing on this page resonate with anyone with Lyme or any other chronic disease who reads this.

Back to Lyme and Fluoroquinolones

Perhaps I’m biased because fluoroquinolones hurt me, but I can’t believe that a drug that depletes mitochondrial DNA, leads to a massive amount of oxidative stress, depletes intracellular magnesium and decimates the microbiome is helpful to people who are already suffering from a chronic illness.  I understand that the Lyme bacteria need to be fought, but destroying your cells seems like a lousy way to do it.  (Interestingly, it has been suggested that tetracyclines, including doxycycline, are supportive of mitochondria whereas FQs are destructive.)  You need healthy cells in order to fight.  How to improve the health of your cells is a really difficult question and I don’t know the right answer.  I’m pretty sure that fluoroquinolones aren’t the answer to much though – certainly not for chronic Lyme Disease.

The main thing that I can ask of my friends with Lyme is this – please be careful.  Don’t think that the side-effects of drugs are “rare” or that they won’t happen to you.  Know the potential for chronic multi-symptom illness that comes with each fluoroquinolone pill, and if you choose to take Cipro, Levaquin or Avelox, do so with your eyes wide open.  Informed consent is, after all, quite important.

May you all find healing.

Best regards,

Lisa

 

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Mitochondria, Neuropathy, HIV and Fluoroquinolones

mitochondria structure

I wrote the following post and put it on one of my other sites, Mito Madness.

Mitochondria, Neuropathy, HIV and Fluoroquinolones

Though the damage done by fluoroquinolones to mitochondria is well documented, as is the connection between mitochondrial damage and many illnesses and maladies, the knowledge of the connections is not widespread.  Hopefully, some emerging research will change that.

Thank you for reading it!

Regards,

Lisa

 

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Shades of Grey – The Good and Bad of Fluoroquinolones

Hormones Matter Logo2

Here is a new post about fluoroquinolones on Hormones Matter –

Shades of Grey – The Good and Bad of Fluoroquinolones

From it –

“Fluoroquinolones can do good, but they can do harm too. Categorizing things in terms of good or bad is the natural inclination of most people, but it’s never that simple for drugs. All drugs can do good, but they can do harm too – hence the list of side-effects that comes with each prescription. We can’t yet ask for drugs to only do good, and never do harm – that’s not the way the world works. But we can ask for dangerous drugs to be used appropriately. It is ONLY appropriate for fluoroquinolones to be used in life-or-death situations when other antibiotics aren’t effective. To use them flippantly, and when they aren’t entirely necessary, is inappropriate and a violation of the Hippocratic Oath.”

I hate that cipro hurt me.  I hate that fluoroquinolones hurt any of us.  But I still don’t think that they should be banned entirely.  It is not unreasonable to demand that they be used sensibly though.  The amount of collateral damage done by FQs is unacceptable.  Collateral damage should be minimized.  It’s not too much to ask for.

 

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Hidden Reactions: How Side-Effects of Cipro, Levaquin and Avelox Are Under-Recognized

lisa-bloomquist2 Baron and Budd

Adverse reactions to cipro, levaquin, avelox, floxin or any other fluoroquinolone, are tricky and difficult to recognize because of:

 

  • Delayed reactions
  • Tolerance thresholds
  • The absurdity of the severity of adverse reactions to fluoroquinolones

This post, published on the Baron & Budd web site, goes over information about those three things.

Hidden Reactions: How Side-Effects of Cipro, Levaquin and Avelox Are Under-Recognized

Please share it so that people can connect their pain to the culprit – Bayer and Johnson & Johnson.

 

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Dr. Mercola Multivitamin Give-Away

 

Dr. Mercola has done a lot to bring attention to the devastating, damaging effects of fluoroquinolones.  Here are some articles about fluoroquinolone toxicity that have been published on Dr. Mercola’s site:

Antibiotics to Avoid Like the Plague Due to FDA’s Oversight Failure

Antibiotic Alert: The Drug the Doctor Ordered Could Cause Deadly Side Effects

Warning: Fluoroquinolone Antibiotics May Cause Permanent Nerve Damage

Now, Dr. Mercola would like to give away one of his Whole Food Multivitamins away to one lucky floxie.

You can read about Dr. Mercola’s multivitamin HEREhttp://products.mercola.com/multivitamin-vital-minerals/

On that link, you will see that Dr. Mercola says this about the Whole Food Multivitamin –

First of all, I made every effort working with the award-winning lab to ensure that as many nutrients as possible ended up directly linked to their whole food source. To me, this became crucial in providing you a top-notch supplement.

Multivitamin +Plus provides you with a highly concentrated daily supplement containing more than 50 nutritional ingredients… all in a special herbal food base.

One of the challenges your body faces every day is combating free radicals.

Free radicals are highly reactive molecules and fragments of molecules that may impact your body at your cellular level.

Free radicals constantly attack your body proteins, carbohydrates, fats, and DNA, and can cause potentially serious health concerns unless they are kept in check. Every cell in your body suffers an estimated 10,000 free radical hits each day. Your body does its best to fight back — in what is an actual battlefield at the cellular level.

To help balance the effects of free radicals, Multivitamin +Plus Vital Minerals provides you with high-potency amounts of an exclusive antioxidant formula that includes:*

  • Beta-carotene— healthy vision and immune system support*
  • Vitamin C— promotes tissue growth and repair, and healthy gums*
  • Vitamin D3— supports heart, bone, vascular and immune system health*
  • Vitamin E— helps support your muscular system*
  • Selenium— bolsters your healthy immune system*
  • L-cysteine— supports your immune and respiratory systems*
  • Lutein— helps promote your healthy vision*
  • Lycopene— supports your immune system*
  • Red wine proanthocyanidins— provides cardiovascular support*
  • And select extracts and powders from over 25 fruits, vegetables, and herbs

 

To enter to win the multivitamin, please leave a comment below and I will use a random number generator to select a winner.  One comment/entry per person, please.  If you prefer to enter privately, please send me an email to floxiehope@gmail.com with the subject “Mercola Give-Away” and I’ll enter you into the contest.  A winner will be selected on Friday September 12, 2014 at 5 PM Mountain Standard Time.

Good luck to all!

Lisa’s note – I was not compensated in any way for this raffle.  I know that a lot of floxies use Dr. Mercola’s products and thought that a vitamin give-away would be a nice thing for our community.  A member of Dr. Mercola’s staff approached me with the idea.

Dear Doctors: There is valuable information in “Permanent Peripheral Neuropathy: A Case Report on a Rare but Serious Debilitating Side-Effect of Fluoroquinolone Administration“

dear_doctor_frame

I’ve been struggling to write a “Dear Doctors” post for a while.  Everything that I’ve tried to write has been too bitter, or too manic, or too scolding, and nothing has yet been published.

I recently stumbled across a great article though, and I now have a “Dear Doctors” letter.  Here it is:

Dear Doctors,

Read this:

Journal of Investigative Medicine HIGH IMPACT CASE REPORTS, “Permanent Peripheral Neuropathy: A Case Report on a Rare but Serious Debilitating Side-Effect of Fluoroquinolone Administration

And please change how you prescribe fluoroquinolones accordingly.

Thank you,

Lisa Bloomquist

The article is great and I highly recommend that everyone read it.  Following is my breakdown of it.  Everything that is italicized is a direct quote from “Permanent Peripheral Neuropathy, A Case Report on a Rare but Serious Debilitating Side-Effect of Fluoroquinolone Administration” by Dr. Jacquelyn K. Francis and Dr. Elizabeth Higgins.  (Everything that is not italicized is my commentary.)  The article was published in the Journal of Investigative Medicine High Impact Case Reports and was published on July 27, 2014.

INTRO

While there has been success in recent years in decreasing the numbers of unnecessary antibiotic administrations, still rampant in medical practice is the inappropriate use of antibiotics. Fluoroquinolones administration is no different.

Indeed – fluoroquinolones are being prescribed inappropriately.  Not many people are arguing that fluoroquinolone antibiotics should be banned.  Most of us are arguing that fluoroquinolone antibiotics are used INAPPROPRIATELY, and in being used inappropriately they are causing unnecessary harm.

These bactericidal agents are capable of central nervous system (CNS) penetration, with an impressive treatment profile that includes an enhanced spectrum of activity, high oral bioavailability, high serum drug concentration that parallels that of intravenous drug administration, and rapid mechanism of action. It is for this reason that physicians favor these drugs for treatment of simple infections, which range from uncomplicated urinary tract infections (UTIs) and gastrointestinal infections to lower respiratory infections and pneumonias.

Unfortunately, they’re not APPROPRIATE for use in treating simple infections.  Fluoroquinolones are strong drugs.  They are chemotherapy drugs masquerading as antibiotics.  But doctors reach for them for simple infections because, well, these two quotes illustrate the problem well:

In The New York Times article, “Popular Antibiotics May Carry Serious Side-Effects” it was noted that, “In an interview, Mahyar Etminan, a pharmacological epidemiologist at the University of British Columbia, said the drugs were overused ‘by lazy doctors who are trying to kill a fly with an automatic weapon.’”

In “Your Doctor’s Knee-Jerk Reflex: How Not to Get Kicked” by Dr. David Katz, M.D., published in the Huffington Post, it was noted that, “Often, the easiest way for a busy clinician to be sure to ‘cover the bases’  with an antibiotic is to go after a fly with an elephant gun. The collateral damage can, predictably, be considerable; a consequence of knee-jerk prescribing.”

According to established guidelines, however, these antibiotics are recommended as drugs of last resort and for treatment of cases refractory to other safer antibiotic alternatives.

When it is uncovered that the increase in rates of fibromyalgia, autism, autoimmune diseases, diabetes, chronic fatigue syndrome / M.E., ALS, Alzheimer’s Disease, Lymphoma and other diseases since 1990 is due to fluoroquinolones, doctors will cry to the FDA and AMA about how they weren’t warned.  But they were warned.  FDA and AMA guidelines state that fluoroquinolones should only be used as a last resort and that magnesium levels should be checked prior to administration of fluoroquinolones.  Too many doctors just ignored those recommendations.

Reports in recent years of the adverse drug events of these drugs are on the rise, with not only an overrepresentation of common antibiotic complaints, including diarrhea, nausea, and headache that occur at rates higher than most other antimicrobials on the market, but there is also mounting evidence suggesting the potential for long-term adverse peripheral nervous system (PNS) effects from fluoroquinolone usage. The need for physicians to be judicious when prescribing these drugs is therefore paramount.

Patients are crossing their tolerance thresholds for fluoroquinolones.  There is only so much damage that their cells can withstand, and people are developing fluoroquinolone toxicity syndrome after crossing their cellular damage threshold.

Yes, physicians need to be judicious when prescribing these drugs.  That would be lovely.

CASE PRESENTATION

A 57-year-old Caucasian female presented to outpatient clinic with complaints of dysuria, polyuria, and urinary urgency. Urinalysis showed 2+ leukocytes and trace blood. Based on her clinical presentation, she was treated for UTI with a ciprofloxacin regimen of 250 mg twice a day for 5 days. Subsequent urine culture showed no evidence of organism, and against advice for reevaluation, she was lost to follow-up. She presented 2 months later reporting whole body burning and alopecia. The burning, she claimed, started 2 or 3 days after completion of the prescribed course of ciprofloxacin. The burning lasted 3 weeks and resolved only to recur, unrelentingly, 3 weeks later. She had been unable to adorn clothing during this time, for she said this triggered whole body burning. At the point wherein she was finally able to wear clothing, she presented to the clinic. Hydration and Epsom salt soaks provided no relief. She reported pain of 10/10.

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Note that the patient DIDN’T EVEN HAVE AN INFECTION.  She was poisoned with ciprofloxacin when there wasn’t even an infection.  Talk about INAPPROPRIATE!  Criminal is more like it!

Her peripheral neuropathy pain was so bad that she was “unable to adorn clothing during this time, for she said this triggered whole body burning.”  THAT. IS. HORRIBLE!  A pain level of 10/10 is what she experienced.  That is a SEVERE adverse reaction and even the possibility of a reaction like that should dissuade doctors from prescribing fluoroquinolones frivolously.

She didn’t even have an infection.  It boggles my mind.

Her past medical history is significant for trigeminal neuralgia, in remission for 12 years. The patient was on no medications at the time of her visit. She has no specific medication allergies, but does get gastrointestinal symptoms with opioids, namely, fentanyl. Physical examination was unremarkable. Vitals at the time that she was seen included the following: blood pressure 132/78 mm Hg, temperature of 97°F, heart rate of 60 beats per minute, respirations of 18. Her body mass index was 17.94, down from 20.3 two months earlier. On detailed neurologic examination, cranial nerves II through XII were intact bilaterally. There was no pronator drift of outstretched arms. There was some muscle wasting in biceps; however, overall tone was normal. Strength was full bilaterally. Reflexes were 2+ and symmetric at the biceps, triceps, knees, and ankles. Plantar responses were flexor. Light touch and pinprick produced pain and paresthesias diffusely in the upper and lower extremities; however, position sense and vibration sense were intact in fingers and toes. Rapid alternating movements and fine finger movements were intact. There was no dysmetria on finger-to-nose and heel-knee-shin. There were no abnormal or extraneous movements. Romberg was absent. The patient’s posture was normal. Gait was steady with normal, though tentative, steps, base, arm swing, and turning. Heel and toe walking were normal. Tandem gait was normal. She had no discernable rash or skin lesions.

Subsequent complete blood work analysis to check for an electrolyte abnormality basis of her complaints was unremarkable. Her complete blood count was normal with a hematocrit of 41%. Her vitamin B12 level was 258 pg/mL, with a normal range of 200 to 900 pg/mL. Her thyroid stimulating hormone level was 2.05, with a normal range of 0.4 to 6.0. Her immunoglobulin levels were normal. Her vitamin D level was 13 nmol/L (optimal >30 nmol/L). Copper level was 98 mg (normal 50-80 mg). Vitamin E was normal at 12.7 µg/mL (normal range = 5.5-17 µg/mL). Vitamin B1 was normal at 5.4 µg/dL (normal range = 2.5-7.5 µg/dL).

Her blood work and further questioning could provide no new medical etiology for her symptoms, and so the patient was subsequently sent for complete neurological workup. Workup included heavy metal toxicity screening to assess for possible heavy metal exposure to lead, mercury, cadmium, and zinc. Electrophysiological studies were also done to assess neuromuscular nerve action potential transmission, a test that could discern a neuromuscular disorder etiology. Three-millimeter skin punch biopsy to assess for small fiber density and possible neurologic process were also done. These tests were all negative. Neurological workup could not determine a unique cause of her symptoms. It was concluded that if her symptoms were neurologic-based, it was, in fact, a multifocal process.

Fluoroquinolone toxicity syndrome has been unrecognized for so long for many reasons.  One of the biggest reasons is that the tests all come out “normal.”  This simply means that the tests are wrong.  If a patient has pain levels that are a 10/10, there’s something wrong with her and if the tests don’t show it, the tests aren’t sufficient.

Two years after the initial onset of symptoms, the patient continues to suffer from polyneuropathies chronologically related to ciprofloxacin use. At her most recent visit, she describes constant pain of 7/10 and is unable, she states, to ambulate for more than 2 minutes, without intense shooting pains up and down her lower extremities. She describes “pins and needles” up and down her legs and thighs radiating to her buttocks and feet. She claims that her upper body and abdomen have now been spared of such feelings. She describes severe alopecia and ambulates now with a broad-based gait. She describes being on permanent disability because of her condition. The rest of her physical examination remains unchanged. There are no gross neurological deficits discernible on neurologic examination. The patient remains on amitriptyline 20 mg daily for control of her pain symptoms.

This patient’s life has been ruined.  My heart goes out to her.  Two years later, she still suffers from chronic pain and is now disabled.  THIS IS NOT OKAY.

DISCUSSION

Fluoroquinolones are fluorinated quinolones, the only bactericidal agent in the antibiotic class capable of directly inhibiting DNA synthesis.

Fluoroquinlones may not be the only antibiotics that damage mitochondria, but they are the only antibiotic class that inhibits DNA synthesis.  And who, exactly, thought it would be a good idea to give people drugs that inhibit DNA synthesis?

The harm that fluoroquinolones do to DNA shouldn’t come as a surprise.  It was noted in “Quinolone binding to DNA is mediated by magnesium ions” in 1992 that, “Even if reconsidered in terms of affinity, the interaction with DNA is still of great concern because of the possible long-term genotoxicity of quinolone compounds, which are increasingly adopted as first-choice antibiotics for the treatment of many infections, and because it addresses the real mechanism of action for this class of molecules.”

Caution was warranted.  It was not used.

They do this by promoting cleavage of bacterial DNA in the DNA–enzyme complexes of DNA gyrase and topoisomerase IV.  Generally, gram-negative antibacterial activity correlates with inhibition of DNA gyrase, and gram-positive antibacterial activity corresponds with inhibition of DNA type IV topoisomerase.  With the introduction of these drugs in the 1960s, physicians were able, for the first time, to treat severe gram-negative infections orally. The first successful fluorination of part of the quinolone drug in 1986, in the form of norfloxacin, brought with it the capability of crossing the blood–brain barrier and achieving CNS penetration.

Fluoroquinolones have the capacity to cross the blood-brain barrier and achieve CNS penetration.  NOT GOOD.

This and the already great treatment profile in the form of enhanced spectrum of activity, high oral bioavailability, high serum drug concentration comparable to intravenous infusion, and rapid mechanism of action added to the popularity of these drugs ultimately resulting in the indiscriminate use of these drugs. The enhanced treatment profile of these drugs came at a price however, with adverse effects so severe that use of many fluoroquinolones since then being restricted or the drugs withdrawn from the market entirely.

These drugs have been used indiscriminately at a huge price.  If, as I suggested above, the increase in chronic, debilitating, mysterious diseases that has come about since 1990 is, indeed, due to fluoroquinolones, the “price” of these drugs is even greater than what the study’s authors have noted.

One of the challenges of diagnosing a patient with fluoroquinolone-associated peripheral neuropathy is the diffuse, confusing, and delayed array of symptoms that can occur. A 1996 study first brought these adverse effects to light.

I could cry.  Delayed adverse reactions are noted in a journal article.  The fact that symptoms are diffuse, confusing, and difficult to diagnose is acknowledged in a journal article.  E-hugs to Dr. Francis and Dr. Higgins.

While patients on the fluorinated drugs exhibited less side effects than those associated with first-generation quinolone predecessors, such as nausea and gastrointestinal disturbances, 0.9% to 1.6% experienced adverse reactions relating to the peripheral and central nervous system, including headache, dizziness, drowsiness, agitation, psychosis, and convulsions, as well as peripheral sensory disturbances, symptoms that had never been complained of prior, at least not on any significant scale.

It is not okay to induce possibly permanent nervous system damage in .9 to 1.6% of those who take fluoroquinolones – especially when the nervous system damage can be permanent.  26.9 million prescriptions for fluoroquinolones were written in 2011 alone.  .9% of 26.9 million is 242,100 and 1.6% of 26.9 million is 430,400 – PEOPLE.  Between 242,100 and 430,400 people had adverse central and/or peripheral nervous system side-effects.

Note that peripheral nervous system damage from fluoroquinolones could easily be mistaken/misdiagnosed as fibromyalgia, and central nervous system damage can lead to depression, anxiety and other psychiatric illnesses.

Of these patients, 81% had symptoms occurring within 1 week of drug administration, with paresthesia being the mainly reported symptom. Five years later, a 2001 study found that contrary to previous reports suggesting that fluoroquinolone-associated PNS events are mild and short term, 80% of study participants reported severe events that typically involved multiple organ systems, especially the PNS, with symptom onset as early as 24 hours within initiation of treatment. 58% of these cases had symptoms lasting greater than 1 year.

Indeed.  My thanks to the authors of this paper for noting that peripheral nervous system adverse reactions to fluoroquinolones are neither mild nor short term.  Compared to other floxies, my reaction was moderate – and I still had pain for more than a year.

Another 2001 formal study that sought to assess the prevalence of fluoroquinolone-induced PNS adverse side effects highlighted the severity of these effects. The study concluded that there was a high association between fluoroquinolone antibiotics and severe, long-term adverse PNS and multiple organ system effects that included PNS sensory symptoms (91%), peripheral neuropathy motor symptoms (55%), and CNS effects (75%). Over 80% of the patients surveyed had sequalae stemming from fluoroquinolone use that lasted for greater than 1 year.  A subset of these patients and their adverse drug events are included in Table 1.

Risk is a function of frequency and severity of adverse reactions.  Adverse reactions to fluoroquinolones are severe.  I don’t think that they’re rare (https://floxiehope.com/2013/08/09/is-fluoroquinolone-toxicity-rare/).  Fluoroquinolones are far too risky to be used as they are currently being used.

Despite these seemingly significant numbers and overwhelming reports from patients, physicians continue to prescribe fluoroquinolone antibiotics unsystematically, against US Food and Drug Administration recommendations. The pressures of health care facilities and patients alike to increase patient turnaround and quickly alleviate symptoms may compound this problem. 

Dear doctors – please, please, please listen.  Please listen to your patients, listen to the AMA and the FDA, and listen to your colleagues who wrote this case-study.  We see that fluoroquinolones are dangerous drugs and we are trying to tell you about them.

As highlighted in the aforementioned case, the peripheral neuropathy reported with fluoroquinolone administration can be severe, debilitating, and permanent. It is for this reason that physicians need to practice due diligence when prescribing not only antibiotics, but any drug.

THANK YOU Dr. Francis and Dr. Higgins!

Physicians also need to practice vigilance in the event of an adverse reaction. They can do this with careful follow-up of patients and ensure that patients are aware of all the side effects that may be associated with their prescribed drug. Patients need to know what to look for and where to go in the event that one of these symptoms become manifest. It is our hope that the updated FDA warning and presentation of this case will encourage physicians to be more conscientious of their treatment selections.

Yes, we need recognition and an appropriate treatment protocol for everyone suffering from fluoroquinolone toxicity.  Thank you for saying it so well, Drs. Francis and Higgins!

TAKE HOME POINTS

  • The FDA recommends that fluoroquinolones be used as a drug of last resort and for treatment of cases refractory to other safer antibiotic alternatives.
  • The FDA updated their black box warnings on all fluoroquinolones to stress the rapidity of onset and permanence of peripheral neuropathy associated with their use.
  • Physicians should be aware of the risks and side effects associated with the drugs that are prescribed and be able to inform patients of the risks associated with the use of these drugs.
  • Physicians should always aim to administer the least broad spectrum antibiotic possible based on known sensitivities and regional resistance PATTERNS.

I know that I’m incredibly biased, but I think that the tide is shifting.  I think that the severity of adverse reactions to fluoroquinolones are being recognized.  With recognition will come change in their behavior.

I hope for change.

 

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