Tag Archives: chronic fatigue syndrome

Review of Through the Shadowlands

July 21, 2017 Leave a comment

I just finished reading Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand by Julie Rehmeyer. It’s a memoir about the author’s journey through Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It’s a beautifully written, thoughtful, insightful look at ME/CFS, and how Rehmeyer got through the harrowing illness and regained her health.

Many floxies deal with horrible, intractable fatigue, and suffer from ME/CFS after getting poisoned by Cipro, Levaquin, Avelox, or other fluoroquinolones. I experienced some fatigue while going through fluoroquinolone toxicity, but I never considered myself to be afflicted with ME/CFS (my fatigue episodes passed relatively quickly–thank God). However, the bouts of fatigue I had were frightening, and going through my own “mysterious illness” gave me empathy for others dealing with under-acknowledged diseases. I became facebook friends with several people in the ME/CFS community, and I gained an even greater appreciation for the severity of ME/CFS and the strength it takes to endure it. It truly is a horrific disease, and the horror of it is only compounded by the lack of acknowledgement it receives.

I hope that Rehmeyer’s book brings attention to ME/CFS, and that people recognize how severe and devastating the disease truly is. And I hope that recognition of ME/CFS brings attention to all multi-symptom, chronic, mysterious illnesses that “can’t be reduced to tidy pathologies or a uniform set of symptoms.” These illnesses are real–they are not “just in your head,” and they are less “rare” than people would like to acknowledge. Yet these illnesses are systematically overlooked because they are too complex to form a single hypothesis around. Autoimmune diseases, neurodegenerative diseases, autonomic nervous system diseases, mitochondrial dysfunction diseases, fibromyalgia, ME/CFS, POTS, EDS, and, of course, iatrogenic diseases like fluoroquinolone toxicity, are complex and multifaceted, and they affect every part of the body and every individual differently. They’re difficult to study, but studying them is important. Ignoring them, and pretending that they don’t exist, isn’t helpful to anyone.

Some parts of Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand really resonated with me, and reminded me of my experience with fluoroquinolone toxicity. I’m going to point them out here, along with comments, with the hope that they will trigger in you some of the recognition they triggered in me.

In the epilogue, Rehmeyer states:

“Although I’ve certainly worked hard to improve my health as I have, I also want to be clear: I got lucky. I could have done everything I did and still be desperately ill. I think I get some credit for my improvement, but only some. A big part of it is simple good fortune.”

Yup. I’ve been meaning to write a post about the luck aspect of recovery for a while. Why did I recover from fluoroquinolone toxicity when others don’t? Luck. Pure, simple, unfair, ridiculous, stupid luck. I got lucky. I was able to get into a spiral of health. Early in Through the Shadowlands, Rehmeyer says that health and illness are like valleys between hills, and your state of being is like a marble (or boulder–depending on how big your metaphorical valleys are) that is trapped in that valley. It’s easy to stay in the valley–whether that be the health valley or the illness valley. It’s difficult to push yourself up a hill into the other valley. (Hopefully I’m remembering the metaphor roughly correctly–sorry if not.) I was able to get over that hill, into the valley of health, and I was able to do it without near as much suffering as others. Why? Luck. I’m not a better person, nor did I do more things correctly. I was just luckier.

In chapter 19: Moldy Science, Rehmeyer states:

“Learning all this, I felt as if my brain were quietly exploding. A scientific organization put out a statement that was contrary to science, and scientists couldn’t get it removed for 12 years! How could that happen?

And if respected organizations could sow doubt about whether mold is a significant risk factor for asthma–a link that had been observed in the very first textbook on asthma ever written, in 1698–what hope did I have that science would come to understand my weird illness?”

Science is political. You knew that, right? It’s not supposed to be, but it is, so don’t think it’s not.

Just as there have been scientists silenced about the dangers of mold for decades, there are scientists who recognized that topoisomerase interrupting drugs, like fluoroquinolones, are a very bad idea, and are quite harmful to mitochondrial and bacterial DNA. Perhaps messing with our mitochondrial and bacterial DNA and RNA replication enzymes isn’t a particularly good idea. But if a scientist was to say something as brazen as that he or she would be admonished, and maybe even punished.

Throughout Through the Shadowlands, Rehmeyer seems to struggle with her worldview. Is she a scientist who only does treatments that are backed up by placebo controlled trials, or is she a person who is willing to try anything to get better, even if it has a woo-woo component to it? If she tries the alternative treatments, can she still consider herself to be a skeptical scientist? But if science is failing her, and her fellow ME/CFS sufferers, does it deserve the credence and weight she gives it? After a significant struggle, Rehmeyer seems to settle on the approach that depends more on evidence gathered from her personal experience than evidence gathered in labs. She opens herself up to alternative treatments, and reluctantly finds that they help her. She seems to long for evidence of why they help her, and to struggle with the possibility that they are just placebos. At the end of the book, it seems that Rehmeyer stops trying to find identity in the science vs. alternative medicine paradigm, and she settles into a worldview that identifies her as a person with ME/CFS, who has overcome the disease, and who is now part of that tribe. The scientist and woo-woo tribes are less significant, what is significant is her tribe of fellow sufferers (and her family and other loved ones).

In chapter 11: An Unlikely Hypothesis, Rehmeyer writes about the facebook community of fellow ME/CFS sufferers. She states:

“My attitude toward my fellow patients had already started to soften as I had been exploring the forum more, and on Facebook, I found them endearing, and even inspiring. I saw how they turned to one another not just for advice as on the forum, but for a community and support and a social life after they’d been abandoned by so much of the world.”

I find the floxie community, largely found on facebook, to be incredibly inspiring. They are brave, thoughtful, generous, wonderful people, and I am honored to be among them. I also appreciate the other chronic illness communities, including the ME/CFS community, the POTS community, the floxie community, the other pharma-injured community, the fibromyalgia community, etc. All of these communities of people with chronic, poorly understood diseases are wonderfully supportive and strong, and they are appreciated.

Much of Through the Shadowlands felt familiar. I knew who many of the people were that Rehmeyer wrote about, even when she didn’t refer to them by name. I felt as if I was reading about the journey of a friend (or, at least a friend of a friend), and in some ways, I was. The community of people affected by mysterious, chronic, under-recognized illnesses is small, and we have many fights in common. We’re in this together–fighting for recognition, and cures. If Through the Shadowlands helps those suffering with ME/CFS to gain recognition and acknowledgement, perhaps it will hep floxies and others living with mysterious illnesses too.

I recommend that you read Through the Shadowlands. It’s a good book. It’s a well-written, insightful, thoughtful memoir, and I suspect that it will resonate with anyone suffering from a mysterious illness.

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Fluoroquinolone Caused Mitochondrial Damage and Oxidative Stress – What are the Consequences for Floxies?

February 10, 2014 Comments: 11

I’m working on a couple of posts/articles/essays right now about how all sorts of chronic diseases, from diabetes to alzheimer’s to autism, are caused by mitochondrial damage and oxidative stress.  I’m pointing out that pharmaceuticals cause mitochondrial damage and oxidative stress.  Of course, I’m focusing on my least-favorite pharmaceuticals, fluoroquinolones, and am trying to make a case that fluoroquinolones cause many chronic diseases.

That line of thinking is scary as hell for those of us who have had a bad reaction to a fluoroquinolone.

What does the connection between fluoroquinolone induced mitochondrial damage / oxidative stress and chronic diseases mean for us?  What is our prognosis?  Are we going to come down with diabetes or Alzheimer’s?  Are our kids going to be autistic?  Scary stuff – aaaarghhhh!!!  New plan – run and hide on a tropical island far from the internet.

Just so you all know, I’m not sure what it all means.  I am doing my best to put together the pieces of the puzzle.  I’m doing my best to draw conclusions from reputable sources.  I’m doing my best to understand what happened in my body when the Cipro bomb went off in me.  In trying to understand what happened, I’m stumbling upon articles that point to the possibility that the problem is bigger than we think.  It is possible that fluoroquinolones are causally related to fibromyalgia, chronic fatigue syndrome / M.E., all autoimmune diseases, depression, anxiety, bipolar disorder, diabetes, Alzheimer’s, autism, some kinds of cancer, and more.  Are all cases of those chronic diseases caused by fluoroquinolones?  Of course not – most of the diseases are older than fluoroquinolones.  But it’s possible that they have increased hand in hand with fluoroquinolone use because of the damage that fluoroquinolones do to mitochondria, and the oxidative stress that they induce.

It’s also possible that other drugs are the primary culprits.  And I suppose that it’s even possible that junk food that is full of free radical producting chemicals is the culprit behind all the oxidative stress that people who have chronic diseases experience.  Or maybe the problem is GMO corn or childhood vaccines or pesticides or something else.  There are pretty reputable sources that note that pharmaceuticals cause mitochondrial damage and oxidative stress though, so I’m betting that the culprits are Bayer, Johnson & Johnson, Merck, Pfizer, Abbvie and all the other pharmaceutical giants that are very good at making customers and very bad at actually promoting health.

Anyhow, the theory that fluoroquinolones cause mitochondrial damage / oxidative stress and that mito damage / oxidative stress are behind all sorts of chronic diseases is the theory that I’m going with.  Whether I’m right or wrong is yet to be seen.  Even though my theory may scare the crap out of you, your support is still greatly appreciated.  🙂

If I’m wrong, the case against fluoroquinolones is still pretty damning.  With fluoroquinolones, one can convert an acute problem, an infection, into a chronic syndrome that includes destruction of connective tissue (tendons, ligaments, cartilage, fascia, etc.) throughout the body, damage to the nervous systems (central, peripheral and autonomic), and more.  Fluoroquinolone toxicity can develop slowly or quickly.  It can last for months or years.  Tragically, some people don’t recover.  But most people do – with time.

How fluoroquinolones cause the damage that they do is hugely complex and difficult to understand.  Part of the damage mechanism is mitochondrial damage and oxidative stress, hence the trip down chronic disease lane.  Other aspects of how fluoroquinolones work – DNA adducts, RNA transcription errors, disruption of tubulin assembly, etc. are equally daunting and potentially harmful.  Ugh.  Bad news.

But people do recover from fluoroquinolone toxicity.  I did.  I’m fully recovered.  So are the other people who have shared their stories on www.floxiehope.com.  I wonder if the chronic disease prognosis for those who recover is any different from the prognosis for those who don’t, or for those who take fluoroquinolones but don’t have an adverse reaction.  I don’t think that a study to answer that question has been done.  It would be interesting to find out the answer.

Right now, we don’t know the answers though, so we have to make assumptions about our health and our future.  If you’re going to make baseless assumptions about your personal health prognosis though, they may as well be hopeful ones.  Try to believe that you will heal and that once you heal you will be as capable, resilient and durable as you were before a fluoroquinolone knocked you down.  Or, better yet, believe that floxing gave you some sort of health super-powers.  Here is a crazy thought – what if our floxing reaction was actually protective against damaged cells and the conversion of those cells into chronic diseases?  What if our horrible reaction was because of mass apoptosis (programmed cell death), and in dying, those cells kept from reproducing and leading to a chronic disease at some later time?  Now that is a far-fetched hypothesis, but I kind of like it.  I just hope that my recovery doesn’t mean that my bad cells are sticking around now.  :p

Back to fluoroquinolones being related to the chronic diseases – what if I’m right?  What if fluoroquinolone caused mitochondrial damage and oxidative stress is behind all of the chronic diseases of modernity?  Well, it’s a sad state of affairs.  But people should know about it.  They should hear about it.  They have the right to know.

But you are going to be fine.  Try to believe it.

 

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Bring on 2014 – Happy New Year!

December 31, 2013 Comments: 8

NYE 2013-2014.

HAPPY NEW YEAR!

Congratulations!  You made it through 2013!  For those of you who were sick in 2013, there were probably moments that you didn’t think you’d make it through.  You made it though.  You made it to 2014.  Congratulations and may there be many more years for you to look forward to!

I wish you all hope and healing in the new year!  I have no idea how long your road will be, or if 2014 will be better or worse than 2013 for you, but I sincerely hope that it is better in every possible way.  I hope that it is a year of healing for you.  I hope that your pain subsides.  I hope that you get the support you deserve.  I hope that you either gain back what you have lost due to your illness, or that you come to appreciate what you still have.  I hope that you are able to access the people, methods or techniques that help you to move on from your illness.  I hope that you find peace, healing, love, happiness, patience, hope, etc.

For myself, I haven’t thought of any specific New Year’s resolutions quite yet, but I hope that this picture sums up my 2014:

Always wondered

2013 was an empowering year for me.  I started writing about FQ toxicity in June of 2013.  I truly had no clue that anyone would want to read the things that I wrote, but it turns out that people like what I have to say.  I don’t think that they like what I have to say because it’s pretty or because I’m anyone special (I’m not).  I think that they like what I have to say because what I write about is important.  It’s important that the word get out about the dangers of fluoroquinolones.  It’s important that people stop being hurt by the frivolous and foolish over-use of DNA damaging chemotherapy drugs that are being pushed as “safe” antibiotics.  It’s important that people make the connections between many of the mysterious modern diseases that plague us and fluoroquinolones.  Fibromyalgia, Chronic Fatigue Syndrome, all autoimmune diseases, anxiety, depression, dietary intolerances, autonomic nervous system dysfunction, mitochondrial dysfunction, diabetes, Gulf War Syndrome and even autism can be tied to fluoroquinolones.  These are not little problems.  They are serious concerns and it’s important that they be addressed and fixed.  In bringing attention to the role that fluoroquinolones play in each of these diseases, I’m bringing attention to something important.

It’s quite empowering and, though I’m sure that what I just said sounds egotistical, I am humbled by it.  The over-use of fluoroquinolones is a big problem that leads to multiple levels of other serious problems.  The problems are systemic and difficult to bring attention to, much less solve.   Paradigm shifts and systemic changes are needed in order for meaningful change to come about.

It’s a big task, but someone has to do it.  That someone may as well be me.  It may as well be you too.  Even better, it should be all of us together.

We can do this.  We can make change happen.  We can stop people from getting hurt by fluoroquinolones.  We may not be able to save everyone today or even tomorrow, but we can try.  And in trying, we are doing something.  We are making the world a safer and more just place.

“Trying” can be something little or something big.  It can be handing out cards warning people about FQ toxicity, it can be attending the FQ Awareness Rally in Washington D.C., it can be starting a blog, it can be talking to your friends about what happened to you, it can be filing a lawsuit, it can be enacting legislation, etc., etc.

In 2014, I resolve to DO SOMETHING about fluoroquinolone toxicity.  I hope that change comes about.  But if it doesn’t, well, I have my 2015 resolution set, and I’ll keep trying until people know about the causal links between fluoroquinolones and chronic diseases, until the frivolous over-use of fluoroquinolones is stopped, and until they stop giving these poisonous drugs to children.

If you feel inclined, I hope that you feel empowered enough to do something about fluoroquinolone toxicity in 2014 too.  It will take all of us to bring about change.  We can do it though.  We have to be able to.  No one else will and it’s important.  So, bring on 2014.  Let’s get ‘er done.

 

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A Return to Hope

December 23, 2013 Comments: 15

I’ve been doing a lot of research into the mechanisms of action for fluoroquinolones lately.  I’ve been passing what I’ve learned on Floxie Hope.  Unfortunately, much of what I’ve learned hasn’t fallen into the “hopeful” category.  Most of what I’ve learned has been pretty grim.  Fluroquinolones deplete DNA, damage mitochondria, stimulate lymphocytes (immune system cells) deplete irreplaceable enzymes and produce neurotoxins.  Bummer, huh?

In a weird, twisted way, I get excited about these discoveries.  They’re the nails that are going to seal the coffin on these drugs, and maybe even Bayer and Johnson & Johnson.  I imagine these facts bursting into common consciousness with an expose in Time, Scientific American or The New Yorker.  I get excited about being right, about being at the forefront of this problem, about being able to tell people, “I told you so” when they realize that quinolone toxicity is a huge problem that is adversely affecting the lives of millions of people.  Irrefutably showing the danger of these drugs is key to getting their use curbed, to stopping the atrocity of people being maimed by prescription antibiotics.  It’s also the key to justice – once the damage pathway for these drugs is shown, those who have been hurt by them can get compensated for their pain and suffering.

My ego gets wrapped up in fantasies of taking down Bayer and J&J.  I have grandiose notions of saving the world from these nasty, evil drugs that are maiming and killing innocent people.  I want people to connect the dots, to see what I see; that fluoroquinolone toxicity is connected with all autoimmune diseases, Fibromyalgia, Chronic Fatigue Syndrome, Allergies, Dietary Intolerances, Depression and Anxiety, Insomnia, Gulf War Syndrome and even Autism Spectrum Disorders.  I want to be validated by recognition.  I want the world to change.

In wanting validation and change in the world, I have lost track of the purpose of this blog.  The purpose of this blog is not to save the world.  It is not to bring down Bayer or Johnson & Johnson.  It is not to be right.  The purpose of this blog is to give hope for healing to those adversely affected by fluoroquinolone antibiotics.  It is FloxieHOPE.com, not FloxiesDestroyBayer.com.

I apologize for scaring you guys.  I apologize for pointing out the cellular damage that these drugs inflict.  I don’t think that the damage done is irreparable.  I think that most people heal from Fluoroquinolone Toxicity.  I think that most people move on to live full, happy, healthy lives.  I think that DNA is constantly patching and repairing itself.  I think that the body is constantly fighting to neutralize toxins and that even if our enzymes aren’t replaceable, we have enough of them to function or else we’d be dead.  I think that there is hope.  I think that there is healing.

That is why I created this web site.  To let people know that healing is possible.  To tell stories of healing so that those who are scared can realize that there is a light at the end of the tunnel, that they should have hope because this too shall pass.

So I’m sorry for highlighting scary information.  I’m sorry that the focus of many of these posts has been freak-out material, not hopeful, healing material.  I really want you all to be hopeful.  I want you to heal and hope is healing.  It is, I promise.

I can’t promise to be 100% hopeful 100% of the time.  I think that bringing research about the adverse effects of these drugs to the fore is important.  I think that it’s important to try to change the world and to try to stop these drugs from being prescribed inappropriately.  I’ll just promise to try to remember that this site is about supporting people through a difficult time, letting them know that things do get better with time and letting them know that hope is necessary and that healing is possible.

I’m not a Scientist.  I’m not a Chemist or a Toxicologist or a Geneticist.  I’m actually quite annoyed that people with these titles aren’t putting together the implications of these various studies and shouting about them, and thus there is a void.  I’m trying to fill that void by connecting the dots to the best of my abilities, but analyzing these studies is not my area of expertise.  My area of expertise is healing from FQ toxicity.  It’s my area of expertise because it’s what I have done.  I can personally testify that healing is possible because I have healed.  So have the other people who have shared their stories on FloxieHope.com.  We have been scared, we have been hurt and we have healed.  Healing is possible.  It is possible for you too.  Have hope.

 

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