Monthly Archives: March 2014

QVF Assisting Children in Edison

Everyone who has been “Floxed” knows what it feels like to get knocked down. We know what it feels like to have our world shaken and to have things that are precious to us brutally taken away. Fluoroquinolones not only stole our health; for may of us, they stole our jobs, our relationships, our money, our safety-net, our faith in humanity, justice, God, etc. All of those things are heart wrenching to lose.

But in losing our health, jobs, relationships, etc., many of us have gained empathy and compassion for those who are in similarly tragic positions. We understand what it feels like to get knocked down. We can empathize with other people who are struggling. Gaining empathy, compassion, connectedness and community are all beautiful things.

The Quinolone Vigilance Foundation (QVF) is reaching out in compassion to support the children of Edison, New Jersey, who recently lost their elementary school, James Monroe Elementary School, in a fire. The QVF president, Rachel Brummert, lives near Edison and when James Monroe Elementary School burned down on Saturday March 22, 2014, Rachel decided to help out not only as an individual, but also as a representative of the QVF. The QVF is therefore, officially supporting the efforts of those in the Edison community to provide for the children who lost their school.

Information about the fire can be found HERE

Rachel Brummert said of the tragic situation:

This is a big loss to the community, as I am sure you can imagine. While no lives were lost, these kids did lose their sense of security and a piece of their education if they don’t have what they need to learn. As a former Special Education teacher in the Pennsylvania and New Jersey school systems, I know the importance of education and giving children the tools they need to learn.”

If you would like to help the QVF in supporting the children of Edison, donations of school supplies and gift cards will be very much appreciated.  Please send any school supplies or gift cards to:

Bishop Ahr High School
Attention: Debbie Chippendale

1 Tingley Lane, Edison, NJ 08820

For more information on what is needed and how to get donations to the children of Edison, please contact Rachel Brummert at Rachel@saferpills.org.

I am sure that the children who attended James Monroe Elementary will greatly appreciate any donations that are received.

Thank you very much for your consideration!  

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Same Disease, Different Symptoms: It’s all in the Mitochondria

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Fluoroquinolone toxicity affects everyone differently. Why? Because that’s how mitochondrial dysfunction works. WHY? Because mitochondrial produced ROS influence gene expression and we all have different genes. WHAT? Yup, ROS affect gene expression. Perhaps we should be more careful with our mitochondria. After all, our genes are at stake.

Same Disease, Different Symptoms:  It’s all in the Mitochondria

 

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What’s Poisoning You?

The following post is a bit of a rant. It’s inflammatory and is likely to annoy or offend many of you. I apologize for the offense in advance.

Though, as you will see in the following post, I get annoyed when people look exclusively at diet when looking for causes of mysterious diseases, I don’t think that nutrition is unimportant. It is very important. Food is fuel for our bodies, and putting lousy fuel into our engines will lead us to feeling sick and looking sickly.

But fluoroquinolones, and other damaging pharmaceuticals, are like putting sand in the engine. They thoroughly mess up one’s body and mind – suddenly, severely and systemically. Yet the severe cellular damage done by fluoroquinolones is ignored by many physicians providing explanations to their patients as to why their body is going hay-wire. It annoys me to the point that I rant about it on the internet.

Blaming the Standard American Diet (SAD – very sad) for multi-symptom, chronic, mysterious diseases is far better than the alternative of telling people that their disease is all in their head. However, it’s not the full picture and it has problems as well (that I rant about below).

(Relevance of this below) – I totally think that Glenn Beck is floxed. Just sayin’.

What’s Poisoning You?

The American diet is difficult to defend. The typical American meal contains high-fructose corn syrup from genetically modified corn, sugar in amounts that are multiple times higher than those found in any fruit in nature, partially hydrogenated fats, MSG, preservative chemicals, pesticides, herbicides, antibiotics, etc. Additionally, the typical American meal is devoid of vegetables, sprouted grains, fermented foods, fiber, minerals, vitamins, nutrients, etc. This combination has, undoubtedly, contributed to all sorts of chronic diseases – from obesity to cancer.

However, I think that, collectively, we are taking the “what you eat determines your health” paradigm too far.

Blaming a poor diet for a person’s illness reeks of victim-blaming. It says to the person who is ill, you wouldn’t be sick if you ate differently. You wouldn’t be sick if you ate more vegetables, or fewer desserts, or more or less carbohydrates, or more or less protein, or more or less fat. In telling a person who is sick that he or she wouldn’t be sick if he or she had eaten differently, you are telling that person that it is his or her fault that he or she is sick.

Is that fair? And, more importantly, is it true?

Health is determined by many factors, not just diet. Genetics, of course, also play a role in health. Exercise, stress, time in the sun, social connections, etc. also contribute to health – and disease. Exposure to toxins also has a huge effect on health. Toxins in our environment – from pollution and from them being intentionally added to our food and water – affect our health – and being poisoned by them, either slowly or suddenly, can cause illness. Pharmaceuticals are also an under-recognized source of toxins that adversely affects the health of many (though it takes a paradigm shift to realize how much harm prescription drugs do because we all think that drugs should be helping us, not hurting us).

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The blaming of diet for diseases has gotten to a point of ridiculousness. In an article published in The Atlantic entitled Living Sick and Dying Young in Rich America, the author asks a doctor if the autoimmune disease that her husband (who is in his 30s) suffers from is the result of growing up eating Spaghetti-O’s and drinking Pepsi. In a round-about way, blaming addiction to junk food, the doctor confirms that her husband’s diet is the culprit. Really??? Does that really seem reasonable to anyone – that Spaghetti-O’s and Pepsi could cause an autoimmune disease? Because I’m pretty sure that autoimmune diseases are caused by malfunctioning immune system cells, and that the doctor should look at things that have been confirmed to damage immune system cells as potential culprits, before blaming Spaghetti-O’s. And yes, there are plenty of environmental toxins and pharmaceuticals that have been shown to adversely affect immune system cells (lymphocytes).*

On March 20, 2014, former Fox News personality Glenn Beck announced that his doctors had determined that the cause of his neuropathy, inflammation and pain was his diet. His doctor told him, “‘Well, basically, you are being poisoned… Food is poisoning you.’” Glenn Beck looks like a pretty typical American so I’m sure that his diet is not perfect. But I’m also pretty sure that he’s eating FOOD, not poison, and that his doctor is simply wrong in telling him that the neuropathic pain that he is experiencing is due to his food poisoning him. Poison, not food, poisons people. Perhaps Mr. Beck should look at what pharmaceutical poisons he has taken in lately – especially fluoroquinolones – because fluoroquinolones can do enough cellular damage to cause neuropathic pain – but Taco Bell burritos can’t.

I’m sure that Mr. Beck will adjust his diet by cutting out the foods that are perceived to be poison, and I truly hope that helps him. Most people who are suffering from diseases that cannot be cured by modern medicine adjust their diet to try to heal themselves. Many people who are struggling with chronic illness stick to a “perfect” diet. For some, “perfect” means the Paleo Diet. For others, “perfect” means the Specific Carbohydrate Diet. Some stick to a raw food diet. Some juice. Some avoid gluten, or sugar, or dairy, or meat, or all of those things. Yet, even with a “perfect” diet, they are still sick. They have not been magically cured by adding or subtracting some food source. They are sick – chronically ill – and though adjustments to diet may be helpful, they are not a cure for many (maybe most) people.

An even bigger problem with blaming diseases on diet than the victim blaming and nonsense explanations, is that the real explanation for the disease is not sought. Chef Boyardee, Taco Bell and Pepsi become the scapegoats and the real culprit behind the disease is ignored. Something is really causing autoimmune diseases, neuropathic pain, chronic fatigue, fibromyalgia, and all the other diseases that are striking young Americans. Blaming diet, and thus blaming the victim, may be convenient, but it is not the whole answer (or even part of the answer if you are feeling cynical). The real answers will remain elusive until we demand real, sensible answers to the question of what causes the chronic diseases of modernity.

Sure, a diet full of sugar, hydrogenated-fat and chemicals isn’t good for you, and it is surely contributing to many diseases, but does it really make sense to blame a poor diet on body-wide neuropathic pain, or on a person being so drained of energy that they feel like they have the flu and a bus hit them even after a full night’s sleep? It sure doesn’t make sense to me.

What does make sense to me is iatrogenic mitochondrial dysfunction. Many pharmaceuticals, including fluroquinolone antibiotics, statins, metformin (a diabetes drug), multiple chemotherapy drugs, and others, have been shown to damage mitochondria and lead to oxidative stress. Mitochondrial damage and oxidative stress can lead to multi-symptom chronic illnesses and neuropathic pain. (Source)

Perhaps diet isn’t solely to blame for many of the diseases of modernity. Perhaps pharmaceutical drugs – especially fluoroquinolones, and the medical system, share much of the responsibility for causing many of the chronic, mysterious diseases that plague people today.

It’s time for a paradigm shift. Moving away from victim blaming is a very good place to start.

* Here are some articles about how fluoroquinolones adversely effect lymphocytes (immune system cells) –

Nepal Medical College Journal, Genotoxic and cytotoxic effects of antibacterial drug, ciprofloxacin, on human lymphocytes in vitro”

Antimicrobial Agents and Chemotherapy, “Ciprofloxacin Induces an Immunomodulatory Stress Response in Human T Lymphocytes

 

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Your Mighty Mitochondria

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Fun facts – Nalidixic acid, the chemical compound that is the base of all fluoroquinolones, was discovered in 1962. Mitochondrial DNA was discovered in 1967 (by Lynn Margulis who happened to be married to Carl Sagan). So, if you are under the impression that naladixic acid was tested for its affects on mitochondrial DNA, you would be wrong. Information regarding how mitochondria affect gene expression is being uncovered… um… now-ish. So, in the 30+ years that fluoroquinolones have been pushed, they have been used by the human population with zero knowledge of how they affect gene expression (both mitochondrial and nuclear). Gene expression, as you might imagine, is important.

More information can be found in this post, “Your Mighty Mitochondria” published on Hormones Matter:

http://www.hormonesmatter.com/mighty-mitochondria/

 

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Mitochondrial Dysfunction and Related Diseases

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This post, entitled “Some Doctors Don’t Believe In This Disease Yet it Predisposes Many Diseases” was published on Collective Evolution on 03/17/14.

http://www.collective-evolution.com/2014/03/17/mitochondrial-diseases/

Frustratingly little is known about mitochondria and the role that they play in human illness.  I hope that this will change soon.

 

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DNA Damage Testing by Exogen Biotechnology

Exogen Biotechnology has some very cool technology that they have made available to the public.  Their test is able to show how many DNA breaks we have.  Yes, our DNA is breaking, and repairing, all the time.  They have kindly offered to analyze the results of victims of FQ toxicity together so that we can see how our DNA compares to that of the general population.

Information about Exogen Biotechnology can be found on their web site – http://exogenbio.com/

Kits can be ordered through the Exogen Biotechnology Indegogo site – http://www.indiegogo.com/projects/exogen-bio-how-damaged-is-your-dna

THE DEADLINE FOR ORDERING A KIT THROUGH THE INDEGOGO SITE IS MARCH 25, 2014.  (Sorry for the late notice!)

For those suffering from fluoroquinolone toxicity, there is a special opportunity just for you.  For information, please see Terry’s note below.

Here is a video about Exogen Biotechnology:

Here is some information, written By Terry Simpson Brosseau, about how this opportunity is applicable to Floxies:

Invitation to participate in a Fluoroquinolone DNA damage preliminary study
Exogen Biotechnology Inc (http://exogenbio.com/) has invited those suffering from Fluoroquinolone Toxicity to participate as citizen scientists in a preliminary study to see if Exogen’s technology can measure a difference in DNA damage levels between our group and their general population control group. If the preliminary study results in some compelling data, Exogen may follow up with a larger scale study.

Who is Exogen Biotechnology?
Exogen Biotechnology is a health startup aimed at developing cutting-edge technologies for individuals to monitor damage to their DNA and to assess their DNA repair capacities for the purposes of personalized and preventive health care. Exogen’s technological platform for assessing DNA damage and repair capacities was developed at the Lawrence Berkeley National Laboratory by a team of scientists and engineers. Exogen was founded in 2012 to translate this new technology to enable rapid processing of human blood specimens and to make testing services affordable and accessible to the public.

How will this potentially help us?
If our DNA demonstrates that it has more damage than the general population, this could be huge in validating our condition. It might be the first step in developing a diagnostic tool for evaluating an individual’s degree of FQ Toxicity. It also might garner enough attention and interest within the scientific community to raise the alert level for Fluoroquinolone use. Exogen’s preliminary work has already demonstrated that DNA damage increases as we age and that former cancer patients had the highest level of DNA damage for their age group.

How is Exogen funded?

Exogen received an Innovation Grant from the Lawrence Berkeley National Laboratory. In addition to some Angel Investors, Exogen is crowd funding from the public through their Indiegogo campaign. They do not have any ties to pharmaceutical companies or biotech companies and receive no funding from them.

What about privacy?
From their Indiegogo site: “We encourage you to share your personal data with us to link DNA damage
with specific diseases, and environmental and lifestyle factors, but it is not required. For your safety,
your questionnaire data and your results will be anonymized and kept private. We will ensure that
capturing and storing of your data will be HIPAA compliant. The reason for this citizen science study is to gather data to better learn about DNA damage.”  And, “Once we receive your samples, we will only analyze your blood for DNA double-strand break using our proprietary technology.  When we are done, we will safely and securely dispose of all samples.  High-resolution images, similar to an ultra high-resolution picture from a phone camera, of your blod cells, will be taken and securely stored.  We send your DNA double-strand break results to you securely.  That is your personal DNA data that will always be exportable.  We will use this data for research, but it will never be identifiable to you.”

Who can participate in the preliminary study?

Individuals from around the world, who are suffering from fluoroquinolone toxicity, are invited to participate.

Will it cost me anything?
Yes.  For a maximum of 80 people who have experienced Fluoroquinolone Toxicity, Exogen Biotechnology has offered a special rate.  For those living in the United States the cost is $50 USD. For our Canadian neighbors, the fee is $65 USD to cover international shipping charges. For those outside the US and Canada, the cost for the kit is $75.

In addition, I am well aware that cost can be a limiting factor for many of us – and for those who have
been most devastated by our condition, it can be nigh impossible. With that in mind, if you are
interested in participating in this study but can’t cover the entire cost, please email me (FQDNAStudy@gmail.com) with what you can contribute. In addition, for those who are financially able, please let me know if you are willing/able to “Fund-a-Floxie” in part as the need arises. If possible, I will see if I can match donor with donee costs.

I’m in! What do I do?
 Please email me (Terry) at FQDNAStudy@gmail.com with your name, shipping address.  You will be added to a Facebook group called FQ DNA Study Participants where information will be distributed.  You will also receive emails from Terry with information and instructions.
 The deadline for their Indiegogo campaign is March 25, 2014, so payments will need to be made
before that date (instructions to those 80 in the FQ study are to be distributed shortly). I would greatly appreciate it if you can let me know via the above email ASAP if you intend to participate.  Reminder – there are only 80 slots available for Floxies to get the special rate.  As of March 8, 2014, 63 participants had signed up.
 Please indicate if you have had the 23andMe, Myhill UK or any other genetic testing done and are willing to share it with Exogen.
 The blood test kits (finger prick) are estimated to be shipped out in June and July to all participants.

 In summary, I encourage you to read through the information on http://exogenbio.com/ and http://www.indiegogo.com/projects/exogen-bio-how-damaged-is-your-dna

 

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Redefining Recovery

A friend recently wrote me and said (basically), “While I appreciate your efforts in telling people that recovery is possible, I am not going to recover.  Too much damage has been done.  Some of the damage is irreparable.  I just need to come to terms with it.”

She knows her body, so who am I to argue with her?  She knows that the cartilage in her joints is not going to grow back.  She knows that she will never be able to do the physical things that she used to do with ease before she got floxed, because some of the damage done to her truly is permanent.  She will never run, she will never jump, she will never skydive or play soccer.

She has to come to terms with these things – these limitations that were unfairly and unjustly inflicted upon her.

She IS coming to terms with them.  As difficult as it is, she is finding peace and acceptance of her current condition and realistic future prospects.

Her story is not one of doom and gloom though.  Her story is one of perseverance and strength.  It is an amazing, beautiful recovery story.

My friend has come so, so, incredibly far.  She was completely paralyzed for a while – to the point where she couldn’t even chew and blinking was painful.  Now she can stand and even take a few steps.  She is working hard, with physical and mental therapy, to recover.  And she is recovering.  She is improving every single day.  She is working incredibly hard to do things that most people take for granted – chewing, walking, showering, having lunch with friends, etc.  She is doing those things.  Each one of those things is an accomplishment.  Each one shows recovery.  Each step that she takes is the result of a huge amount of strength, perseverance and bravery.

I don’t want to go into more details because her story is for her to tell, not me.

When she is ready, I think that she will have a recovery story here on Floxie Hope.  Because she IS recovering.

I am lucky in that I have been able to get back to the level of health that I was before I got floxed (other than being horribly out of shape).  I can do the things that I used to do before I got sick.  But returning to one’s pre-sickness capacity is not the only way to “recover.”  Recovery can mean progress.  In my mind, recovery means getting to a place in your health journey where you are okay with where you’re at.  You’re not perfect – but you probably never were.  You’re at peace with what you can and cannot do.  Life has gone on.  It has been a struggle, but you have come far.  You have recovered many of your abilities and you are working on getting more back, but you know that life will go on and that you are okay just as you are.  That is recovery that is just as valid as being able to do the things that you used to be able to do before you got sick.

My friend is getting there.  She is recovering.  And I am very proud of her for how far she has come.

The cartilage in her knees may never come back.  It’s the reality of the situation.  But another reality is that she has made incredible progress toward an amazing recovery.  She has further to go, and she is working on it.  She’s working hard every day and her hard work is paying off.  She already has an amazing story of perseverance, tenacity, strength and progress.  And when she gets to where she feels good about where she’s at, when she can say that she’s recovered, I hope that she’ll tell her story on Floxie Hope.

Sadly, and through no fault of their own, some people don’t recover from fluoroquinolone toxicity.  They are hurt too badly to recover.  They are hurt in ways that are insurmountable and no treatment can get them to a place where they feel okay about where they are.  Some people get worse and worse.  Some people die.  It’s tragic and it’s wrong.  My heart goes out to those people who are suffering, who are not recovering.  I am so sorry for your pain.  Truly, from the bottom of my heart, I feel sorrow.

But knowing that your tendons will never be what they used to be, or that your endurance is now sub-par, or that your cartilage is too disintegrated to come back, does not mean that you won’t recover.  Sure, it means that you won’t get back to where you used to be.  But you can still make progress.  You can still do amazing things.  You can still recover.  My friend will prove it.

Thank you for reading Floxie Hope!  I hope that all who read Floxie Hope gain insight, support, understanding and, most of all, HOPE.  If you would like to support Floxie Hope, all contributions will be greatly appreciated!  Click HERE to contribute to Floxie Hope.  Thank you!

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