Tag Archives: chronic illness

Are Fluoroquinolones Causing Connective Tissue Disorders that are Leading to ME/CFS?

The symptoms of fluoroquinolone toxicity often mimic those of ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome). Many people suffering from fluoroquinolone toxicity experience debilitating fatigue, and some are bed-bound and permanently disabled from this symptom, along with all the others that come along with fluoroquinolone toxicity. Both fluoroquinolone toxicity and ME/CFS are multi-symptom, chronic syndromes that are poorly understood and often disregarded by those in the medical community. Research into the mechanisms behind both fluoroquinolone toxicity and ME/CFS show that mitochondria (the energy centers of our cells) are likely related to both diseases, and so is autonomic nervous system dysfunction, mast cell activation, metabolomics, epigenetics, immune system dysfunction, hormonal imbalances, and other areas of human biology. Both fluoroquinolone toxicity and ME/CFS also have significant overlap with other diseases such as Ehlers-Danlos syndromes (EDS), Postural orthostatic tachycardia syndrome (POTS), and fibromyalgia.

The similarities between fluoroquinolone toxicity and ME/CFS may mean that they have a similar root mechanism…. or they may not. The root cause of fluoroquinolone toxicity is, of course, fluoroquinolones. (The mechanism behind fluoroquinolone toxicity is much more complex and the answer to the question of HOW fluoroquinolones hurt people is still being uncovered.) Most people who have ME/CFS don’t report that their symptoms started with fluoroquinolone exposure (though there is almost certainly some overlap, and there are likely some people who have been diagnosed with ME/CFS whose disease started with a fluoroquinolone prescription). There seem to be a variety of triggers that set off ME/CFS in previously healthy individuals, including, but not limited to, mold exposure and sensitivity, and exposure to a viral infection that the body never fully recovers from.

While it is possible that there are many cases of ME/CFS that were brought on by fluoroquinolones, and thus are “actually” fluoroquinolone toxicity (labels, shmables), it is also possible that both diseases/syndromes have a similar underlying mechanism despite different causes, and it is also possible that though the symptoms and features of both diseases are similar, they are actually different on a mechanistic and/or cellular level.

Though the possibilities for differences between fluoroquinolone toxicity and ME/CFS are potentially significant, the similarities are obvious, and it is likely that research that helps ME/CFS sufferers will help fluoroquinolone toxicity sufferers.

There is a theory about the mechanism behind ME/CFS that has recently come to my attention that could, potentially, tie it more directly to fluoroquinolone toxicity. The theory, in a nutshell, is this:

Some people with ME/CFS have an underlying predisposition for EDS, and thus collagen synthesis is disordered and connective tissues are weakened. The ligaments of the craniocervical junction (where your skull meets your first vertebra) become weak and this leads to craniocervical instability (CCI) and atlantoaxial instability (AAI) (together, CCI/AAI). When people suffer from CCI/AAI their neck ligaments don’t sufficiently hold up their head and their brain stems are compressed into their spines. This causes many symptoms of ME/CFS. (I’m not sure exactly how – ask someone who has done far more research into ME/CFS and/or CCI/AAI than me.)

You can read about how CCI/AAI relates to ME/CFS in these two links:

  1. MEchanical Basis
  2. A new diagnosis to add to the list: I have craniocervical and atlantoaxial instability

How does this relate to fluoroquinlones?

It is well known that fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, Floxin/ofloxacin, and a few others) damage connective tissues–including musculoskeletal connective tissues like tendons, cartilage, bone, and muscle, as well as other connective tissues such as ocular tissue (including the retina)eardrums, and cardiac/heart tissue. Multiple studies have found that fluoroquinolones are toxic and damaging to connective tissues. Given the wide differences in tissues that fluoroquinolones have been shown to deleteriously affect–from cartilage to cardiac tissue–it is reasonable to assert that they damage all connective tissues throughout the body. (Read any of the articles in the citations listed below for information about how fluoroquinolones damage connective tissues.)

Given that fluoroquinolones damage connective tissues (probably all connective tissues – see links below), it is possible that they weaken the tendons of the neck and thus lead to CCI/AAI. CCI/AAI then leads to multi-symptom chronic illness including all the symptoms of ME/CFS (which are too numerous to count).

This weakening of tendons and subsequent CCI/AAI likely occurs more often in people with underlying connective tissue disorders like EDS. I suspect (though I have no proof of this) that there are many kinds of EDS that have not yet been identified, and that more people have the genes for a variation of EDS than those who can currently be diagnosed with the disease. It’s also possible that a genetic predisposition toward EDS is not necessary for fluoroquinolones to cause extensive connective tissue damage, and that they do so in everyone who is exposed to them (at varying levels, of course). Fluoroquinolones have been shown to damage dog and rat connective tissues, especially tendons, and human connective tissues exposed to fluoroquinolones have also shown extensive damage both in-vitro and through analysis of people exposed to fluoroquinolones. I have a hard time believing that all the rats, puppies, and people whose tissues were sampled all had underlying EDS prior to their tissues being destroyed by fluoroquinolones. However, it’s possible that underlying genetic predispositions, including those for EDS, determine how severely people are affected by fluoroquinolones. More research is, of course, needed.

Are fluoroquinolones causing CCI/AAI? And is CCI/AAI leading to ME/CFS? Given the large number of studies showing that fluoroquinolones destroy connective tissues and interfere with collagen synthesis, it’s quite plausible (even likely) that they cause CCI/AAI. How, and if, CCI/AAI is connected with ME/CFS is another question. But given the experiences of the authors of MEchanical Basis and A new diagnosis to add to the list: I have craniocervical and atlantoaxial instability, it’s a possibility that is certainly worth exploring.

 

Sources for the assertion that fluoroquinolones cause connective tissue destruction and disordered collagen synthesis:

Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population. Hall, Mederic M. et al. PM&R , Volume 3 , Issue 2 , 132 – 142

Etminan M, Forooghian F, Brophy JM, Bird ST, Maberley D. Oral Fluoroquinolones and the Risk of Retinal Detachment. JAMA. 2012;307(13):1414-1419. doi:10.1001/jama.2012.383

Tsai WC, Hsu CC, Chen CP, et al. Ciprofloxacin up-regulates tendon cells to express matrix metalloproteinase-2 with degradation of type I collagen. J Orthop Res. 2011;29(1):67-73

Lee C, Lee MG, Chen Y, Lee S, Chen Y, Chen S, Chang S. Risk of Aortic Dissection and Aortic Aneurysm in Patients Taking Oral Fluoroquinolone. JAMA Intern Med. 2015;175(11):1839-1847. doi:10.1001/jamainternmed.2015.5389

Kaleagasioglu F, Olcay E. Fluoroquinolone-induced tendinopathy: etiology and preventive measures. Tohoku J Exp Med. 2012;226(4):251-258.

Adel Alrwisan, Patrick J. Antonelli, Almut G. Winterstein; Quinolone Ear Drops After Tympanostomy Tubes and the Risk of Eardrum Perforation: A Retrospective Cohort Study. Clin Infect Dis 2017; 64 (8): 1052-1058. doi: 10.1093/cid/cix032

Remote Work After Fluoroquinolone Toxicity

This is a guest post written by Michelle P. You can learn more about Michelle’s experience with fluoroquinolone toxicity on her episode of The Floxie Hope Podcast – https://floxiehope.com/2017/07/17/floxie-hope-podcast-episode-22-michelle/. You can also read about her fluoroquinolone toxicity journey on her web site, https://barefootaya.com/. 

 

When I was floxed in July 2016, I was working a very high stress, physical job in Los Angeles. I worked on film sets for over 12 hours a day, usually 6 days a week. It was an excruciating position as a healthy person, but as a floxed person, it was much worse.

For the first month I was floxed, I only had fatigue for the month of July (I had taken Cipro in late June), so I didn’t know anything was wrong and I had continued working, trying to get extra sleep by going to bed earlier and earlier. I usually went to work around 6AM or 7AM and came home around 7PM-9PM. By earlier and earlier, I mean that at one point I went to bed at 8PM to wake up for a 7AM call and I still felt exhausted. “This job is killing me!” I thought… but it was the Cipro.

Anyway, about a month into it, my arm went numb, then the rest of my body, yada yada. The fatigue was so bad that I could barely stand at work and I started becoming super anxious, partially from the raging neurotoxicity I didn’t yet know about and partially from a very understandable reaction to feeling your entire body slowly become numb. I wasn’t sure what was happening to me, so for the first few days, I continued to work and refused to drive. What if I would become paralyzed, like with Guillain Barré, or something? I didn’t know.

Fast forward to being bed bound at my parents’ house with tendon damage, panic attacks, and the ability to stick a needle in my arm only to feel nothing (this helped for the hundreds of blood tests I received – no exaggeration.) My parents lived in rural Upstate New York, a much different place from the Californian city I called home.

I was nervous, not just for my health, but for my finances. I had done enough research on Fluoroquinolone Toxicity at this point that I was confident in my ability to heal… or at least that I was trying my best. We would see about the outcome. As for my finances, I had just spent $1000 to ship my car across the country (I still couldn’t drive) along with flight tickets and thousands of dollars in medical bills, waiting for a collection agency to pick them up. Oh, and I had 5 figures worth of student loans due in a week with my bank account in the red. Film set work, contrary to popular belief, isn’t so glamorous and it doesn’t pay well.

The YouTube videos I watched and the stories I read from other floxies were from people who were married to a partner with health insurance, from people who were already retired, from those who had savings accounts with more than a couple thousand dollars, or from people who were ‘so grateful’ that they had the ability to work from home.

I couldn’t work from home at all for my job at the time. My job was all in person: moving set pieces, walking cast to the stage, coordinating meals for the crew, organizing paperwork, etc., so I lost my job and I was left with nothing income-wise.

After posting on Facebook updating my extended network about my health status, my words reeked of anxiety. I received a private message from an old college friend that went something like this: “Hey, I’m guessing you need a job that you can work from home right now.”

He was reading my mind. “I’m not sure if my current job is hiring, but they will be. I’m quitting next week. I can refer you.”

My friend hooked me up with a job writing video scripts and editing video for newspaper articles. It paid $15/hr, which wasn’t great, but it was something to hold me over. I could make my own hours and I had to work a minimum of 20 hours. It was perfect. I took the job.

Unfortunately for floxies, covering the news isn’t really great for chemically-induced anxiety. I wrote scripts for news articles about deaths, politics, makeup routines (why), and unnecessary celebrities like The Kardashians. It was soul-sucking and once I started healing, I would notice that it induced my anxiety, my hands and feet would go numb again, and I would have panic attacks later that day. Thanks, Cipro! I quit the job.

Months later, I needed a new job and I wanted something that gave me as much freedom as this job had. Another friend of mine who was traveling in South America told me that she was teaching English as a Second Language to Chinese kids online. That seemed interesting, so I asked her for more information and she ended up referring me for the position.

What’s great about this job is that it has even more flexibility since it has no minimum or maximum amount of hours you can work. There are incentives for just about everything and the company cares a lot about their employees. Although you work from home as your own boss with no other coworkers, there are teacher groups within the company website and on social media that can answer your questions, commiserate with you, and give you a community to fall back on.

You don’t make a curriculum, you don’t need to buy anything, and you don’t need to sell anything, either. The only requirements are that you have a working computer with a webcam, a stable internet connection, a Bachelor’s degree, at least a year of teaching experience (could be anything from tutoring to being a ski instructor), and experience working with children. That’s it. How much you want to put into the job is up to you.

I currently work at three different online ESL companies:

VIPKID : Teach kids for around $20/hr on average, Bachelor’s degree and native English speaking required. Growing rapidly, largest online ESL company. Ref code: MICHE0384

gogokid : Teach kids for around $22/hr on average, Bachelor’s degree, online teaching experience, and native English speaking required, must teach at least one class a week. Brand new company. Ref code: YH2HDTPA

Cambly : Speak with advanced English speaking adults for $10/hr. This is mostly conversation practice, no curriculum required. No qualifications. Ref code: mischa5

I am so grateful for these companies for keeping me afloat during hard times and allowing me to work for myself in the best way possible. Now I’m mostly recovered, but I plan on sticking with them for the long haul. I had a flare up a few weeks ago and I didn’t have to call in sick. I didn’t have to lose money. I could just sit in a chair and teach English from my home, even with inflamed, damaged tendons.

I wish I had known about this opportunity when I first got floxed because it is such a low-stress job and it pays decently, unlike some of the other work-from-home options out there.

If you want to learn more, and/or you’re interested in applying, please feel free to email me at barefootaya@gmail.com. I can give you tips on your application and walk you through the process.

 

******

Autonomic Nervous System Dysfunction from Cipro, Levaquin, and other Fluoroquinolones

Many symptoms of fluoroquinolone toxicity involve autonomic nervous system dysfunction.

The autonomic nervous system (ANS) regulates bodily functions such as the heart rate, digestion, sweating, salivating, respiratory rate, pupillary response, urination, sexual arousal, and certain reflex actions such as coughing, sneezing, swallowing and vomiting. The ANS also controls the balance between the parasympathetic (the “rest and digest” or “feed and breed” system) and the sympathetic (fight or flight system) nervous systems.

Many fluoroquinolone toxicity victims/”floxies” (those who have been poisoned by Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, Floxin/ofloxacin or other fluoroquinolone antibiotics) struggle with:

  • Digestive dysmotility
  • Either sweating too much or too little
  • Increased heart rate / racing heart
  • Breathing difficulty / air hunger
  • Increased frequency, urgency, and pain with urination
  • Sexual dysfunction
  • Loss of libido
  • Dry mouth and dental problems
  • Dry eyes and vision problems
  • Adrenal dysfunction and fatigue
  • Lightheadedness
  • Loss of balance
  • Anxiety
  • Difficulty regulating blood-sugar levels

ANS dysfunction is also common among those with POTS/Postural orthostatic tachycardia syndrome (“The hallmark sign of POTS is a measured increase in heart rate by at least 30 beats per minute within 10 minutes of assuming an upright position”), EDS/Ehlers–Danlos syndrome (a grouping of genetic connective tissue disorders), and MCAS/Mast cell activation syndrome or MCAD/mast cell activation disorder (an inflammatory immune system disorder that leads to many multi-symptom, chronic illness). ANS dysfunction is also a symptom of each of these illnesses.

Fluoroquinolone toxicity symptoms mimic and overlap with those of POTS, EDS, and MCAS/MCAD. All these disorders are multi-symptom, chronic illnesses for which there is no cure. In addition to causing ANS dysfunction, fluoroquinolone toxicity, like EDS, causes connective tissue damage, and like MCAS/MCAD, fluoroquinolone toxicity involves immune system dysfunction. There is significant overlap in symptoms, and maybe pathology, between fluoroquinolone toxicity, POTS, EDS, and MCAS/MCAD.

You can find many examples of ANS dysfunction (and other symptoms of fluoroquinolone toxicity that overlap with symptoms of POTS, EDS, and MCAS/MCAD) in the stories of fluoroquinolone toxicity on https://fqwallofpain.com/, http://www.fluoroquinolonestories.com/, https://www.facebook.com/groups/floxies/ and here on https://floxiehope.com/. Personally, I experienced several ANS dysfunction symptoms, including digestive dysmotility, increased heart rate, dry eyes, loss of balance, anxiety, adrenal fatigue, difficulty regulating blood-sugar levels, and I didn’t sweat for years after I was hurt by ciprofloxacin.

Most of my ANS dysfunction symptoms, along with all my other fluoroquinolone toxicity symptoms, have improved.

The thing that helped to improve my digestive motility most was supplementing hydrochloric acid (HCL). I think that probiotic supplements and foods, meditation, and time also helped to heal my digestive tract.

A Chinese herbal supplement called suxiao jiuxin wan helped to calm my racing heart. I think that acupuncture, stress reduction, and time also helped.

I can’t pinpoint anything specific that cured my dry eyes, inability to sweat, or loss of balance, but those symptoms have all subsided with time.

Anxiety is common among “floxies,” and it can be severe. The post, Treating Fluoroquinolone Anxiety, goes over some suggestions as to how to deal with it. Magnesium and uridine supplements helped me to get through fluoroquinolone-induced anxiety, and those supplements have helped others too. In addition to reading Treating Fluoroquinolone Anxiety, I also suggest reading some of the recovery stories from people who have recovered from fluoroquinolone toxicity anxiety, especially Marcela’s Story, Ruth’s Story, and Nick’s Story.

I still struggle with adrenal fatigue and difficulty regulating my blood-sugar. I tend to feel better when I reduce my stress levels, avoid caffeine, avoid alcohol, and cut out sugar. I’m imperfect about those things though.

ANS dysfunction, and the diseases associated with it (fluoroquinolone toxicity, as well as POTS, EDS, MCAS/MCAD, etc.) are serious, and often the symptoms of these diseases are severe and life-altering. They are not trivial, and there is no easy or simple “cure” for ANS dysfunction or any related diseases.

With the severity of ANS dysfunction and related diseases noted, I’m going to make a suggestion that I hope doesn’t seem too trite:

Love, connection, community, laughter, and peace can all help to heal the autonomic nervous system. Meditation and breathing exercises are helpful too. Anything that you can do to bring love, connection, community, laughter, and peace into your life will be helpful in healing your autonomic nervous system.

Before you accuse me of being too hippy-dippy, hear me out on the logic behind suggesting that love and peace are healing. When you are stressed, or when you feel unsafe or threatened, your sympathetic nervous system–the fight-or-flight system–is activated, and subsequently, your digestive system shuts down, you either sweat profusely or stop sweating, your heart races, your breathing becomes shallow, etc. You have an acute moment of ANS dysfunction. For most people, this situation resolves itself as soon as the stressful moment passes, and the parasympathetic nervous system is re-activated. However, people with ANS dysfunction (whether it is caused by fluoroquinolone toxicity, POTS, EDS, MCAS/MCAD, or something else), get “stuck” in a state of sympathetic nervous system activation and parasympathetic nervous system disengagement. Love, connection, safety, community, laughter, peace, meditation, and more, activate the parasympathetic nervous system, and shut off the sympathetic nervous system that is shutting down your ability to digest food, have sex, see clearly, etc. Activation of the parasympathetic nervous system helps to relieve symptoms of sympathetic nervous system overdrive, and helps to relieve symptoms of ANS dysfunction.

Exercises and practices that activate and heal the vagus nerve–the long nerve that connects your brain to your digestive tract and various organs, and controls your autonomic nervous system–can also help to heal your ANS, and relieve symptoms of ANS dysfunction. The post, Hacking Fluoroquinolone Toxicity via the Nervous System, goes over the connections between the vagus nerve and fluoroquinolone toxicity, and the post, 32 Ways to Stimulate Your Vagus Nerve (and Symptoms of Vagal Dysfunction), goes over some ways that you can stimulate your vagus nerve, which activates the parasympathetic nervous system, and reduces symptoms of ANS dysfunction. Love, laughter, connection, breathing exercises, acupuncture, etc. help to activate and stimulate the vagus nerve.

ANS dysfunction is complex, and it is not an easy thing to fix or “cure,” and I hope that my suggestion of love and stress-reduction as helpful in symptom alleviation isn’t seen as trite or dismissive.

I wish that ANS dysfunction, and the symptoms associated with it, were more acknowledged as symptoms of fluoroquinolone toxicity. They are serious, severe, and cause significant pain and suffering. Even though I am suggesting that peace, love, and meditation are helpful (they are), they are not simple cures that can be implemented in a short period of time. They are processes and practices, and despite doing their best to meditate regularly, love heartily, etc. many people are still very ill with fluoroquinolone toxicity, and other ANS dysfunction diseases. Neither peace nor love are cures for multi-symptom, chronic, illnesses like fluoroquinolone toxicity. Of course love and stress-reduction are helpful, but they’re not cures. We need more cures… and love… and acknowledgement.

 

 

A Letter About How to Get Through Fluoroquinolone Toxicity

A few months ago I received an email from a floxed individual (whom I’ll call “T”) that really succinctly and perfectly summed up what I’m trying to convey with this web site. I asked him if I could share his message and he gave me his blessing. This is what he said:

In your first Floxie Hope Podcast, you said you wanted to change the world. I just wanted to let you know that you changed my world. I suspected that my symptoms were caused by Cipro, but I wasn’t sure until I found your website. All of the stories sounded so similar to mine. So much suffering, and nothing the doctors could do about it.

I read your posts and your e-book eagerly, trying to figure out what I could do and what I could expect. I learned a lot and followed a lot of suggestions, trying to find what worked best for me. Throughout my struggles, several things you wrote or posted stuck with me and helped me get through, including the following.

Stay alive – This seems obvious, but it’s not. There were times during the dark days, when I was at my worst, that suicide seemed like the most obvious choice. I knew I could not endure the life I was living for very long, and I was a burden on my wife. It was her that kept me going through those times. I wanted to see if I could get better so I could be there for her when she needed me, and do the things she needed me to do.
Keep going – This was difficult, because every nerve in my body was telling me to stop. It took a lot of effort and will to keep moving, but I knew it was important, so I did what I could.
Nothing is permanent – It was terrifying to think that the suffering I was experiencing could continue for the rest of my life. When I stopped and thought about my symptoms, I realized that they were very dynamic and were changing all the time. Hopefully, they would change for the better.
Patience and hope – In reading the recovery stories, the two most common things that helped people were time and a positive mental attitude. I kept telling myself and those around me that I would get better. There were times that I didn’t believe it, but eventually I did improve.

It has been almost 18 months since my last dose of Cipro. I can’t say I’m fully healed because I still have symptoms, but they are not nearly as severe as they were a year ago. My focus has shifted from hoping to coping, and I feel like I have my life back. I believe that if I keep up the healthy lifestyle habits I started, I will continue to improve. Thank you for all your encouragement, and for spreading the word about the perils of Fluoroquinolone antibiotics.

I have received countless lovely emails from people who have been floxed that have written beautiful messages to me. They are all appreciated! There’s something about T’s message that stuck with me though, and I wanted to share the message with you.

When I read T’s message I thought, “Exactly – that’s exactly what I’m trying to get across.” Staying alive, keeping going, realizing that our health status fluctuates, patience, and hope, are all so important in getting through the pain and suffering of fluoroquinolone toxicity. I even think that those things help with healing.

Thank you, T, for your lovely, kind, thoughtful, and generous message! I hope that others are getting those messages of hope from Floxie Hope too.

I also hope that T’s email, and this post, serve as a reminder to those of you who are struggling right now. Stay alive. Keep going. Nothing is permanent. Be patient. Have hope. Those things will get you to tomorrow, and tomorrow is a new, hopefully brighter, day. Continue getting to tomorrow, after tomorrow, after tomorrow – perhaps healing, recovery, coping, acceptance, change, relief, or whatever you seek, is in one of those tomorrows.

 

Do Fluoroquinolones Cause Cerebrospinal Fluid Leaks?

It is well known that fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, Floxin/ofloxacin, and a few others) damage connective tissues–including musculoskeletal connective tissues like tendons, cartilage, bone, and muscle, as well as other connective tissues such as ocular tissue (including the retina), eardrums, and cardiac/heart tissue. Multiple studies have found that fluoroquinolones are toxic and damaging to connective tissues. Given the wide differences in tissues that fluoroquinolones have been shown to deleteriously affect–from cartilage to cardiac/heart tissue–it is reasonable to assert that they damage all connective tissues throughout the body. (Read any of the articles in the citations listed below for information about how fluoroquinolones damage connective tissues.)

Given that fluoroquinolones damage connective tissues (probably all connective tissues), I have a new, developing, hypothesis for how fluoroquinolones lead to fluoroquinolone toxicity syndrome/fluoroquinolone associated disability (FQAD). Please keep in mind that this is one of many hypotheses, and it is just one among about a dozen possibilities (you can read about some of the other possibilities on the post What is Fluoroquinolone Toxicity, or through the free ebook Hacking Fluoroquinolones.)

Hypothesis:

Fluoroquinolones damage the dura (dura mater)–the layer of connective tissue that surrounds the brain and spinal cord and keeps spinal fluid around those vital organs. This leads to spinal fluid leakage, which leads to many symptoms of fluoroquinolone toxicity, including:

  • Headaches (Including chronic migraines)
  • Autonomic nervous system dysfunction including POTS (postural orthostatic tachycardia syndrome) symptoms
  • Nausea and/or vomiting
  • Ringing in the ears (tinnitus) and hearing changes
  • Neck pain and stiffness
  • Radicular pain
  • Memory and cognitive problems (and other “neurolgic weirdness”)
  • Fatigue
  • Tachycardia (Racing heart/heart palpitations)
  • Dizziness (especially upon standing)

This wonderful lecture by Dr. Ian Carroll describes how cerebrospinal fluid leaks can lead to symptoms of many illnesses, including “mysterious” diseases like POTS, ME/CFS, fibromyalgia, as well as heart palpitations and severe headaches.

I suggest that you watch the entire video, as well as Dr. Carroll’s other videos on youtube. Here are some notes/highlights from the video above:

  • Many symptoms of POTS are actually cerebrospinal fluid leaks
  • The spinal cord is surrounded by tissue called the dura, and the dura holds cerebrospinal fluid around the spinal cord and brain. It’s like a water-tight bag that holds in cerebrospinal fluid and maintains pressure.
  • What causes people to have cerebrospinal fluid leaks?
    • Messed up connective tissue
      • From connective tissue disorders like ehlers danlos syndrome
      • (From fluoroquinolones???)
    • Something calcified and boney sticking into the dura
      • Bulging discs
    • Iatrogenic damage
      • Lumbar punctures
      • Epidurals
      • Back surgery
    • Car accidents (and other types of jarring, high-speed accidents)
      • Whiplash
  • How do you know if you have messed up connective tissue?
  • Calcium spikes sticking into the dura are difficult to detect via MRI, but they are clearer with a ct myelogram.
  • “Neurologic weirdness” is a sign of cerebrospinal fluid leaks. If someone is more confused later in the day, that can be an example of neurologic weirdness that results from a leak.
  • Cerebrospinal fluid leaks are misunderstood and under-recognized.
    • Post-puncture cerebrospinal fluid leaks are recognized.
    • Longer term cerebrospinal fluid leaks are less recognized and they present differently.
  • Post Dural Puncture Headache (PDPH) vs. Spontaneous Leak
    • Post Dural Puncture Headache (PDPH)
      • Single leak, orthostatic headache, 90% response to single EBP, Natural history understood and mostly benign, rarely mysterious, young women most at risk, fixable.
    • Spontaneous Leak
      • 30-40% multisite leak, late day headache, exertional headache, non-orthostatic CDH, 30% response to single EBP, natural history poorly understood and marked by chronic disability, often mysterious, HDCT, fixable.
  • There are people out there who have cerebrospinal fluid leaks that aren’t being recognized. Many people with cerebrospinal fluid leaks are misdiagnosed. Cerebrospinal fluid leaks are fixable and it is a shame that they aren’t all being recognized.
    • Cerebrospinal fluid leaks are NOT RARE.
  • Symptoms of cerebrospinal fluid leaks:
    • Headache, nausea and/or vomiting, ringing in the ears and hearing changes, neck pain and stiffness, radicular pain, neurological weirdness, fatigue
  • The effects of cerebrospinal fluid leaks on the pituitary gland
    • The pituitary gland is enlarged (How does this affect hormones???)
    • The connection between the pituitary gland and the brain can be disturbed, and this can lead to hormonal disruptions. High prolactin is an indicator of this problem.
  • Cerebrospinal fluid leaks can cause sagging of other parts of the brain.
  • MRIs of people suffering from cerebrospinal fluid leaks often appear normal. They are subtle and most doctors aren’t trained to see them.
  • Treatment of cerebrospinal fluid leaks
    • Epidural blood patches (Dr. Carroll describes how they’re done)
  • Cerebrospinal fluid leaks are NOT RARE, they’re just misdiagnosed and under-recognized

Before I watched Dr. Carroll’s lecture, I knew that cerebrospinal fluid leaks were painful and debilitating, but I didn’t realize that they were connected to “mysterious” disease symptoms or autonomic nervous system damage.

Connecting cerebrospinal fluid leaks to fatigue, a racing heart, blood pressure and blood sugar irregularities, tinnitus, cognitive and memory problems, hormonal abnormalities, etc. establishes a plausible connection between the (well-established) connective tissue damage done by fluoroquinolones, and the array of chronic, mysterious, disease symptoms that people with fluoroquinolone toxicity suffer from. Perhaps fluoroquinolones cause an array of debilitating chronic, mysterious illness symptoms through damaging the dura and allowing cerebrospinal fluid to leak–which leads to multiple symptoms of fluoroquinolone toxicity (and other chronic illnesses). It certainly seems like a plausible hypothesis to me. It actually seems like an easier hypothesis to postulate and prove than many of the other hypotheses regarding fluoroquinolone toxicity that have been put forth. As I noted above, the damage that fluoroquinolones do to connective tissues is well-established and recognized, and if someone looked at the effects of fluoroquinolones on dura mater tissue specifically, this hypothesis would be easily testable.

Some additional evidence supporting the possible connection between fluoroquinolones and cerebrospinal fluid leaks comes from the large number of people in cerebrospinal fluid leak support groups that have taken fluoroquinolones in the past who assert that fluoroquinolones contributed to their cerebrospinal fluid leak. I know that asking people in facebook support groups doesn’t count as a scientific study, but (to the best of my knowledge) no scientific studies of the link between fluoroquinolone use and cerebrospinal fluid leaks has been done, and the testimonials of the people who have cerebrospinal fluid leaks are important–they point both researchers and fellow patients toward research that may provide answers.

I also find it to be interesting that cerebrospinal fluid leaks affect the pituitary gland, which affects hormone production and regulation. Many people with fluoroquinolone toxicity syndrome have hormonal problems–from tanked testosterone to thyroid abnormalities. Maybe fluoroquinolones cause damaged dura tissue, which causes cerebrospinal fluid leaks, which causes pituitary gland structural abnormalities, which causes hormonal dysregulation, which causes multi-symptom chronic illness symptoms.

Dr. Carroll’s hypotheses and observations are fascinating and exciting for those who are dealing with fluoroquinolone toxicity and other multi-symptom, chronic, mysterious illnesses. I hope that they are explored further. Dr. Carroll’s results with patients are incredibly promising, exciting, and hopeful for people who are suffering from multi-symptom, chronic, mysterious illnesses–including those suffering from fluoroquinolone toxicity. I hope that Dr. Carroll, or other clinicians or researchers, look into the connections between fluoroquinolones and chronic cerebrospinal fluid leaks. It’s possible that the connections could lead to a comprehensive theory of fluoroquinolone toxicity, and may also lead to breakthroughs in other chronic illnesses.

Citations:

Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population. Hall, Mederic M. et al. PM&R , Volume 3 , Issue 2 , 132 – 142

Etminan M, Forooghian F, Brophy JM, Bird ST, Maberley D. Oral Fluoroquinolones and the Risk of Retinal Detachment. JAMA. 2012;307(13):1414-1419. doi:10.1001/jama.2012.383

Lee C, Lee MG, Chen Y, Lee S, Chen Y, Chen S, Chang S. Risk of Aortic Dissection and Aortic Aneurysm in Patients Taking Oral Fluoroquinolone. JAMA Intern Med. 2015;175(11):1839-1847. doi:10.1001/jamainternmed.2015.5389

Adel Alrwisan, Patrick J. Antonelli, Almut G. Winterstein; Quinolone Ear Drops After Tympanostomy Tubes and the Risk of Eardrum Perforation: A Retrospective Cohort Study. Clin Infect Dis 2017; 64 (8): 1052-1058. doi: 10.1093/cid/cix032

 

Happy Holidays 2015

Happy Holidays, friends!

For those who celebrate Chanukkah, HAPPY CHANUKKAH!

For those who celebrate Christmas, MERRY CHRISTMAS!

And for those who just want to celebrate the solstice, HAPPY SOLSTICE!

I hope that each of you has a lovely holiday season, filled with love and joy! I hope that any pain you’re experiencing because of FQ toxicity is lessened by the warmth and love of family and friends.

Though I sincerely hope that your holidays are filled with joy and love, I know that the holidays can be difficult for many people–especially those dealing with mysterious, chronic illness (like fluoroquinolone toxicity).

It’s difficult enough to feel like your body is falling apart–it’s even rougher when you’re expected to decorate the house.

It’s difficult enough to have a mysterious illness that most medical professionals don’t understand–it’s even rougher when family members don’t understand.

It’s difficult enough to have lost your job and income because of your illness–it’s even rougher when you feel guilty about not being able to afford presents for your loved ones.

It’s difficult enough to deal with horrible food sensitivities–it’s even rougher when everyone thinks that your food sensitivities are made up and that you should just have a cookie.

It’s difficult enough to deal with fatigue and exhaustion–it’s even rougher when kids need your time, attention and energy.

The holidays can, without a doubt, be a time of struggle for those dealing with multi-symptom, mysterious illnesses like fluoroquinolone toxicity.

I hope that those who are dealing with pain, exhaustion, lack of acknowledgement, financial troubles, grief, loneliness, etc. this holiday season are able to find support, love and healing. If those aren’t possible, I hope that you just are able to get through the season not too terribly scathed.

I hope that the traditions of the season give you comfort and joy. I hope that sitting by a fire warms your bones, and that hot apple cider warms your tummy. I hope that you get and give presents that show you and your loved ones that you are, indeed, loved. I hope that you enjoy some delicious food. I hope that you feel loved and appreciated and that both lessen the pain that you’re experiencing. I hope that you feel grateful for the gifts that remain in your life, because cultivating a feeling of gratitude is healing and good for the soul. I hope that this is a time of healing for your body, mind and spirit.

I truly wish you Happy Holidays, friends!

Huge hugs,

Lisa

Post Script – Tragically, several people have lost their battles with fluoroquinolone toxicity recently. My heart aches for their loved ones. I’m sure that this holiday season will be especially difficult for them, and I am so, so, so sorry for their losses! I hope that they are able to find some hope and healing even though the holidays will, undoubtedly, be difficult. Huge hugs to each of you!

 

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Are Dangerous Antibiotics Causing Chronic Illness?

Fearless-Parent_Dangerous-Antibiotics-Causing-Chronic-Illness_Featured3

 

I wrote the following post about fluoroquinolone toxicity for Fearless Parent:

ARE DANGEROUS ANTIBIOTICS CAUSING CHRONIC ILLNESS?

Please check it out and share it.  Thank you!

Fearless Parent is a great organization with lots of interesting articles on their web site, and many interesting podcasts.

I was interviewed on the Fearless Parent Podcast a few weeks ago.  You can get more information about the podcast, and listen to it, HERE.

For those who are parents, or who want to spread the word about the dangers of fluoroquinolones to parents, this post on Hormones Matter is a good one to share too – DON’T LET YOUR BABIES GROW UP TO BE FLOXIES.

Thank you for spreading the word about the dangers of fluoroquinolones!  I HATE that children are getting floxed.  HATE IT.  Perhaps, with awareness, we can keep some kids safe.

 

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They Don’t Understand

It may be impossible for anyone who has not experienced fluoroquinolone toxicity to understand what it’s like.

It’s difficult for the person who is going through fluoroquinolone toxicity to explain that EVERYTHING is going wrong; and it is even more difficult for those around them to understand.

It’s beyond most people’s comprehension that a commonly prescribed antibiotic, maybe one that they themselves have taken, can cause debilitating pain, exhaustion, loss of mental capacity, inability to move, etc. in their formerly healthy loved one.  Most people think that antibiotics are benign, so they are unable to understand that an antibiotic destroyed the health of their spouse, friend, child, parent, etc.  They think, “it must be something else,” or “the drug should be out of your system by now,” or, simply, “what are you talking about?!” when you tell them that all of your health problems can be traced back to the antibiotic that you took to treat a urinary tract, or sinus, or prostate, or respiratory infection.

They don’t understand that the loss of health is real, that it is severe, and that it may last a while.

They trust doctors.  They trust the system.  They trust that the FDA is properly regulating drugs and protecting people from dangerous drugs.

They may not understand exactly how drugs work, but they think that someone does.  They believe that if a drug wasn’t safe, it wouldn’t be on the market.  They think that it wouldn’t have made it through the testing process if it wasn’t safe and better than drugs that are already available.  They think that the FDA has done a thorough and complete evaluation of all drugs that are on the market, and that if fluoroquinolones caused horrible adverse reactions in most people, they wouldn’t continue to be on the market.

They think that all drugs have side-effects, but those side-effects are rare.

They think that adverse drug reactions look like allergic reactions, and they think that you should immediately recover when the drug is “out of your system.”  They don’t understand that adverse drug reactions can manifest as multi-symptom chronic illness.

They don’t understand how you could suddenly be unable to walk, or think, or do the things that you used to be able to do with ease.

The fact that Floxies “look fine” makes it even more difficult to understand what a floxed loved one is going through.

They don’t understand how the tests could show that you’re “fine” when you say that you feel anything but “fine.”

They think that you’re a bit crazy, and probably a conspiracy theorist, when you wonder if other people who are suffering from mysterious, chronic illness may be suffering from fluoroquinolone toxicity too.  You see Floxies everywhere.  They don’t understand that.

They don’t understand the ups and downs, the relapses and the bad days following good days.

They don’t “get it” because they haven’t experienced it.  They don’t understand because they haven’t had to.  Their perception of the competence of the FDA and the medical system hasn’t been shaped by getting poisoned by an antibiotic that is assumed to have “an excellent record of safety and efficacy.”

I didn’t understand anything to do with fluoroquinolone toxicity before it happened to me.  If it had happened to a friend, family member or lover, I wouldn’t have understood.  I wouldn’t have “gotten it.”  I would have believed everything that I wrote above about belief, faith really, in the system that is supposed to make and keep us healthy.  I did believe everything that I wrote above.  And if a loved one had come down with fluoroquinolone toxicity, I probably would have continued to believe those things.  I would not have understood.  It took getting knocked down myself to understand – to really see and comprehend what a mysterious, pharmaceutical induced illness was like.

Many try to understand.  There are some loved ones of Floxies who work very hard to understand and support their sick loved ones.  They research and advocate for their spouse, child, parent or friend.  They listen with caring, compassion and kindness.  They do their best to be supportive and understanding.  They are wonderful, and greatly appreciated.

Most people, even really good people, don’t understand though.

On some level, it has to be okay.  It’s perfectly possible for them to still love and support you, without really “getting it,” without really understanding.

In order to maintain the relationships in your life, I think that it’s necessary to forgive them for not understanding.

They can’t understand.  It’s too bizarre.  It’s too foreign.  It’s too strange.  It’s too upsetting.

They still love you.  And you still love them.  So forgive them for not understanding.  Forgive them for not understanding your pain, or anxiety, or immobility.  Forgive them for not sharing your feelings of anger toward the system that allowed you to be poisoned.  Forgive them for not understanding how a drug could cause long-term damage to you.

Forgive them because you love them, and they love you.

They probably miss the old you – just like you miss the old you – and it’s probably hard for them to deal with the sick you – just like it’s hard for you to deal with the sick you.

This whole mess of fluoroquinolone toxicity is hard.  It’s hard for everyone involved.  It’s hardest for the people who have to deal first-hand with the pain and suffering that comes with getting poisoned.  It’s also hard for those who love Floxies to deal with.

Forgive them for not dealing with your sickness perfectly.  I’m guessing that you haven’t dealt with it perfectly either.  I know I didn’t.

We all want understanding.  We all want empathy and sympathy and compassion from those whom we are closest to.

Even if you can’t get that empathy from those whom you are closest to, because they just don’t understand, it is healing to forgive them.  They can’t understand because they haven’t been through it.  But you can give them understanding and compassion, because you understand their perspective.  After all, their perspective used to be your perspective.  You can forgive them for not understanding.  They may never understand how you are feeling and what you are experiencing, and that’s okay.  It must be okay.  Because you love them, and they love you, and they just want you to get better.

We grow when we forgive.  We heal when we forgive.  Forgiving is probably even necessary for healing and growth… and love.  Love is healing and it is necessary.  Forgiveness of those who don’t understand, who can’t understand, helps you to keep your heart open to love.

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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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“Side Effects” or collateral damage? Is there a difference?

The mantra of “all drugs have side-effects” has been so ingrained in us that we seem to have forgotten that these “side-effects” are deadly or devastating assaults on the health of those who suffer from them.  It is seen as a necessary evil that the medical/pharmaceutical industry has collateral damage and, rather than working to minimize the number of casualties that it has, we have accepted that they must happen and we look the other way.

When did this become okay?  When did it become okay for PEOPLE – sons, daughters, mothers, fathers, sisters, brothers, loved human beings – to become collateral damage in the quest for big pharma’s profits?  Even if you’re not feeling cynical enough to agree with the last sentence, we should still ask, when did it become okay for people to become collateral damage in the quest for minimizing disease and infection?

It is assumed that a certain amount of collateral damage (“side-effects” sounds nicer, but the truth is that some people are sacrificed) is necessary.  But is that assumption true?  It may be true sometimes.  The benefits of a dangerous drug may outweigh the risk of adverse effects in some cases.  But for dangerous drugs, where severe damage to the people who take them is a possibility, collateral damage should be minimized.  Policies should be put in place to minimize the number of people who are exposed to dangerous drugs.  Protocols should be established to ensure that patients are aware that the drugs that they’re taking are dangerous so that true informed consent can be established prior to administration of a drug that has severe adverse effects.

This is common sense.  So why isn’t it being done?  We could all go down the path of conspiracy theories about pharmaceutical companies creating customers instead of providing tools that will actually help and heal people, but, well, I don’t want this article to get lost down that rabbit hole.  But it is still shameful, and a collective tragedy for humanity, that the real dangers of drugs are not realized and recognized and that proper policies and protocols are not in place to minimize the damage caused by them.

I’m guessing that most of you agree in theory, but to really see that it’s a problem, you need an example.

Fluoroquinolone antibiotics, Cipro, Levaquin, Avelox, etc. are DANGEROUS drugs.  These popular antibiotics, 26.9 million prescriptions for fluoroquinolones were written in 2011 (per the FDA), can cause damage to connective tissue (tendons, ligaments, cartilage, fascia, etc.) throughout the body, damage to the nervous systems (central, peripheral and autonomic), and more.  They disrupt and damage mtDNA, cause mitochondrial malfunction and increase oxidative stress throughout the body.  They cause a massive decrease in important antioxidants like glutatione and superoxide dismutase (SOD) and increase production of lipid peroxide and reactive oxygen species (ROS) that result in cell death.  CELL DEATH.  There is no known cure or treatment for those who are suffering from the adverse effects of these drugs.

When someone does have an adverse reaction to a fluoroquinolone antibiotic (again, Cipro, Levaquin, Avelox, etc.) it can be devastating.  In 2001 Dr. Jay S. Cohen did a study on those who are suffering from severe Fluoroquinolone Toxicity Syndrome and he noted that:

“It is difficult to describe the severity of these reactions. They are devastating. Many of the people in my study were healthy before their reactions. Some were high intensity athletes. Suddenly they were disabled, in terrible pain, unable to work, walk, or sleep.”

On my 32nd birthday I took Cipro to treat a urinary tract infection.  It damaged me.  I experienced peripheral neuropathy (an effect that the FDA just acknowledged on August 15, 2013 – http://www.fda.gov/Drugs/DrugSafety/ucm365050.htm) that made it painful to walk for months, my tendons were weakened and inflamed for a year, I lost my memory, concentration and reading comprehension, I suffered from anxiety and depression, I have heart palpitations and my heart rate has increased.

I was lucky.

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Greg wasn’t as lucky as me.  3 years after taking Cipro for the third time (his reaction was minimal the first two times) he is still unable to walk more than a couple hundred yards because his tendons have disintegrated and torn.  For years after having an adverse reaction to Cipro, he used an electric scooter to get around (a traditional wheelchair isn’t an option when the tendons in your arms are torn too.)  He has had to leave his profession as a professor.  He continues to struggle with his health on a daily basis.

25 year old Zachary says of his condition after taking Cipro, “My tendons, cartilage and nervous system have been chemically torn apart from the inside out. The pain that this causes me 24 hours a day, 7 days a week is excruciating beyond words and I have suffered through it without reprieve, alone, for almost half a year now. I have gone from being nearly 190 lbs, a martial arts teacher and body builder to under 160 lbs, crippled, unable to exercise at all and barely able to walk most of the time; all because I was given a drug that I never needed, that no one really needs, for a suspected infection.”

Though these three examples are of the damage done by Cipro, the other fluoroquinolone antibiotics, Levaquin, Avelox and a few less commonly used ones, are just as devastating.

One woman posted in one of the fluoroquinolone toxicity support groups that if she were an animal, she would get put down.  Think about that for a second.  She is a person, a daughter, maybe a mother and a wife, who thinks that the most humane thing to do is to put her down.  That’s how tortured she feels.  Of course, we don’t put down people and I’m not advocating that we do, I just think that it illustrates the point of how damaging and cruel these drugs are to their victims.

Zach’s words are illustrative of the inhumane torture that people feel when they are suffering from an acute adverse reaction to a fluoroquinolone, “The pain that this causes me 24 hours a day, 7 days a week is excruciating beyond words and I have suffered through it without reprieve.”  That is torture.  It’s cruel and it’s wrong.  We know that torture is wrong when it comes to prisoners of war, yet when Bayer and Johnson & Johnson chemically torture people we call it “side-effects” and look the other way.  It’s not okay though.  There is nothing that is okay about innocent people having system-wide breakdowns that are torturous, cruel and unnecessary.

You may be thinking, out of 26.9 million prescriptions, only a handful of people have been disabled by it, that’s okay.  But think about it, is it really okay?  Even if the number of people who are severely adversely affected by these drugs is small, and I would argue that it’s not, is it really okay for an ANTIBIOTIC to cause people to be disabled and to suffer?  The people who have been hurt by these drugs have lost so much of themselves – their ability to move, their ability to think, their ability to relate to other people, their livelihood, etc.  They lost these things when there were other, safer, drugs available that could have gotten rid of their infection.  No other class of antibiotics even has the potential for this much harm.  Penicillins, tetracyclines, cephalosporins – they’re not perfect, but they won’t cause a long-lasting, severe syndrome that tears apart connective tissue (tendons, ligaments, fascia, etc.) and damages the nervous systems (central, peripheral, autonomic).

Greg, Zachary and I are collateral damage, but we didn’t need to be.  The damage done to us could have been prevented.  A safer alternative drug could have, and should have, been given to us.  We could have been properly warned of the dangers of these drugs before they were administered.  A protocol could have been established to determine whether or not these drugs were absolutely necessary before the prescription was written.  Suffering could have been diminished with the use of a safer alternative drug.

It is a tragedy that people are needlessly suffering from preventable adverse reactions to unnecessarily strong and dangerous drugs.  Please be compassionate toward those who are hurt.  Please shift your thinking from, “all drugs have side-effects” to “side-effects should be minimized in every way possible because they are unacceptable.”  Just as importantly, please don’t become a victim yourself.  Don’t take Cipro, Levaquin or Avelox.  There are safe alternatives in almost every situation.

In closing, here are some wonderfully scathing words of Zachary’s on the topic of fluoroquinolones:

“Fluoroquinolone antibiotics have no place in the practice of medicine unless you agree that experimenting on human beings by irreversibly altering their DNA with purposefully unpredictable results and thus indefinitely crippling them unwittingly is something that falls under the definition of “health.” I’m thinking more in terms of “nauseatingly inhumane,” but that’s just me.”

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