Tag Archives: chronic multi-symptom illness

The Bleeding Edge and Parallels with Fluoroquinolone Toxicity

Have you seen the documentary The Bleeding Edge? It’s a wonderful film about the hazards of medical devices that I highly recommend. It’s currently (August 2018) available on Netflix. If you haven’t seen it, please do. It is an eye-opening, thought-provoking, insightful, frightening film.

The Bleeding Edge features stories from people who have suffered adverse reactions to various medical devises and procedures. Victims of Essure, mesh implants, metal hip replacements, and robotic surgical procedures report the harm done to them by these devices and procedures in the film.

The Bleeding Edge is a stark and scary reminder that, unfortunately, too often doctors are not abiding by the Hippocratic Oath. “First, do no harm” has gone by the wayside as these products and procedures maim their victims. Compounding the tragedy of the harm caused by these devices or procedures is the fact that, in many cases, there are safer devices or procedures available that would have had the intended results that the patients (and presumably their physicians) sought. Tying a woman’s tubes is a safer method of permanent sterilization than Essure; ceramic hip replacements are safer than metal ones; physical therapy can strengthen the pelvic floor and relieve symptoms of incontinence as well as mesh can; and, a surgeon’s hand may be a safer tool than a robotic arm. However, these safer procedures were not performed on the victims featured, or on thousands of other people, because the entire medical system ignored their Hippocratic Oath. Doctors (or administrators or insurance companies) were swayed to use these newer less-safe methods by marketing, efficiency, money, or ignorance–and patients were hurt in the process. It’s not okay, and steps back toward the basis of medicine in the Hippocratic Oath are, sadly, necessary.

There are several parallels between the experiences of people hurt by fluoroquinolone antibiotics (i.e. “floxies”) and the people featured in The Bleeding Edge. The adverse reactions to Essure are particularly similar to adverse reactions to fluoroquinolones. Adverse reactions to Essure look, and seem to feel, an awful lot like autoimmune diseases. Likewise, fluoroquinolone toxicity looks and feels a lot like an autoimmune disease. Essure adverse reactions are often severe and they affect multiple bodily functions. The women who had adverse reactions to Essure often suffered from permanent disability, even after the metal springs were removed from their body. Likewise, even long after fluoroquinolones “should” be out of a person’s body, the effects remain. Unfortunately, both Essure and fluoroquinolone adverse reactions can be permanent.

Like those featured in The Bleeding Edge who suffered from the toxic effects of metal-on-metal hip implants, fluoroquinolone victims often experience psychiatric adverse reactions. Fluoroquinolones can induce many serious mental health symptoms, and the FDA recently added “disturbances in attention, disorientation, agitation, nervousness, memory impairment, and serious disturbances in mental abilities called delirium” as highlighted adverse reactions to fluoroquinolones. Fluoroquinolones can also induce psychosis. The patient featured in The Bleeding Edge that suffered from psychosis, tremors, and other serious mental adverse effects from a metal hip replacement, is an Orthopedic Surgeon himself, and he “said he would never have believed neurological problems could come from orthopedic devices, if it wasn’t for that experience, and now tests the cobalt levels of his patients if they complain of having Parkinson’s or dementia-like symptoms.” (source). The victims of metal hip replacements are often told that their symptoms are simply a result of getting older. Fluoroquinolones are given to people of all ages, but those who are over 30 are often told that their symptoms are from “getting old” not from the drugs.

None of the adverse reactions featured in The Bleeding Edge are what one would intuitively expect an adverse reaction to look like. Who would think that a type of hip replacement could lead to psychosis? Who would think that a sterilization procedure could lead to a permanent autoimmune/neuroimmune disease? Similarly, who would think that a commonly prescribed class of antibiotics could cause multi-symptom, chronic, illness that has a lot in-common with these illnesses brought on by medical device adverse reactions? It’s absurd and unbelievable. It’s true though. Adverse reactions don’t look like they are “supposed” to look. They aren’t intuitive and they aren’t easy to identify.

Hopefully The Bleeding Edge will reform how patients and doctors alike view medical device safety. I hope that it also reforms how people think about adverse reactions generally, and that recognition of the connections between adverse drug and device reactions and multi-symptom, chronic, “mysterious” diseases starts to enter mainstream consciousness.

Watch The Bleeding Edge. It is a great film that has a message that needs to be heard.

Sorry, I don’t know how to squeeze this in gracefully, but several of the victims featured in the film had their intestines fall out of their bodies post-hysterectomy via robotic surgery. Is that not one of the most horrifying things imaginable–to have your intestines fall out of your body? Aaaaaaagh!!! Floxies can at least be thankful that our organs generally stay inside our bodies.

Hyperparathyroidism

Several floxies have reported that they have been diagnosed with hyperparathyroidism.

Though I think that fluoroquinolones can cause hyperparathyroidism, I am not going to go into that right now – I hope to explore the connections in future posts.

For right now, I want to encourage all floxies to get tested for hyperparathyroidism.

The parathyroid gland controls the amount of calcium in the body. Calcium homeostasis (which helps set the stage for magnesium homeostasis as well) is so important, it has its own entire little endocrine system to control it – the parathyroid glands.

Hyperparathyroidism is caused by a non-cancerous tumor on one (or more) of the four parathyroid glands. This tumor causes the parathyroid glad to release too much parathyroid hormone (PTH), which causes high blood calcium. Though parathyroid tumors are not cancerous, they are dangerous because high blood calcium can cause “osteoporosis, chronic fatigue, kidney stones, stroke, high blood pressure and increased cancer risks (a partial list).” Additionally, hyperparathyroidism is linked to tendon ruptures and many of the other symptoms of fluoroquinolone toxicity.

In a recent article in The Atlantic, “Garry Shandling and the Disease You Didn’t Know About: The comedian suffered from hyperparathyroidism, a rare and under-publicized condition that can sometimes be fatal, James Fallows notes that his doctor stated:

“a parathyroid disorder was about as damaging as smoking a pack of cigarettes per day. It weakened the bones; it raised the risk of heart attacks and some cancers, and kidney stones too; it caused mood disorders; and—I’ll confess the most alarming—it led to memory lapses, attention failures, and dementia. The bone-weakening is because the hyperactive gland continually draws calcium out of the bones and into the blood serum. Most of the other problems are because of disturbances in calcium’s role as a neurotransmitter. My wife later told me that she thought I was getting dumber by the day in the year before the operation.”

The initial tests for hyperparathyroidism involve testing levels of calcium and PTH in the blood. Getting your calcium and PTH levels tested is relatively easy, non-invasive, and inexpensive. Your doctor should be able to test your levels of both calcium and PTH (note that calcium and PTH should be tested simultaneously). High, or even high-normal levels of calcium and PTH are red flags, and test results should be paid very close attention to.

It should be noted that PTH has a very short half-life (about five minutes), and that multiple tests may need to be run in order to get an accurate reading on your calcium/PTH levels. If both calcium and PTH are way out of range, you have your diagnosis of hyperparathyroidism. If both calcium and PTH are high normal – you test again – and maybe a third time – to see if this is consistent, getting worse, or if you just happened to “catch a high” one time.  If you are getting consistently higher results on both – that’s a problem.

Unfortunately, I’ve also heard from some floxie friends whose doctors weren’t concerned about very high calcium levels. Please be aware that excess calcium is a VERY big deal – it’s not bonus good calcium making your bones stronger – it’s calcium being stolen from your bones that is now circulating through your body. If your calcium tests come back high, or even high-normal, I encourage you to chat with your doctor about the possibility of you suffering from hyperparathyroidism. If your doctor isn’t concerned about this possibility, I suggest finding another doctor.

This video is an excellent overview of hyperparathyroidism:

The solution for hyperparathyroidism is surgical removal of the parathyroid gland that has the tumor (the tumor is called an adenoma). Luckily, we don’t need all four of our parathyroid glands to live a healthy and full life – people do just fine with as few as one parathyroid gland. I certainly don’t take surgery lightly, but it is a solid solution to the problem of hyperparathyroidism.

A lot of good information about hyperparathyroidism can be found on http://www.parathyroid.com/.

 

 

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UCSD Fluoroquinolone Effects Study

Have you taken the UCSD Fluoroquinolone Effects Study survey yet?  If so, THANK YOU!!!!  If not, please do.  Here’s the link to it –

http://www.fqstudy.info/Fluoroquinolone_Effects_Study/Welcome.html

This study is important on so many levels.  Your participation in the study is important on many levels.

You have the opportunity to TELL YOUR STORY TO RESEARCH SCIENTISTS through the study/survey.  The survey has several narrative sections where you can describe, in as much detail as you wish, how fluoroquinolones have affected you.  You can tell the researchers about how fluoroquinolone toxicity caused you pain and loss.  You can describe how fluoroquinolones have adversely affected not only your health, but also your family, your career, your finances, etc.  Your story will be heard.  Your pain will be acknowledged and it will be counted.

It feels good to tell your story.  It feels good to scream about how wrong it is that your life has been devastated by a drug that is perceived as innocuous.  It feels good to be counted.

Through studies like the UCSD Fluoroquinolone Effects Study, the severity of adverse reactions to fluoroquinolones can be quantified.  It can be shown that the effects of fluoroquinolones are not transient or insignificant.

If we don’t participate in studies like this one (and report our side-effects to the FDA, and write our story for the Wall of Pain), the researchers, the FDA and all the doctors that are prescribing fluoroquinolones will continue thinking that fluoroquinolone toxicity is rare, and that the side-effects are transient and insignificant.  We know that the side-effects of fluoroquinolones are severe, and that many people are adversely affected by them.  The way that we communicate this to the FDA, doctors, and everyone else is through participating in studies like the UCSD Fluoroquinolone Effects Study.

When updating the warning label to include the risk of PERMANENT PERIPHERAL NEUROPATHY that is associated with fluoroquinolone use, the FDA searched for case studies that were documented in peer reviewed journal articles.  You can read the FDA report HERE.  They gave far more weight to the patient reports published in journal articles than they gave to the patient reports that they received through the adverse event reporting system (AERS).  If you want the FDA to change how fluoroquiolones are regulated, participating in this study is a very good way to push them in the right direction.

Dr. Beatrice A. Golomb, M.D., Ph.D. is conducting the UCSD Fluoroquinlone Effects study.  She’s as legitimate as a scientist can possibly get.  Check out her C.V. / resume – http://www.fqstudy.info/Fluoroquinolone_Effects_Study/About_Dr._Golomb.html  Ridiculous, huh?  She accomplished more before she turned 20 than I will in my entire life (and I’m not a total slug).   She’s the type of person that can (and hopefully will) change the world.  She needs your help in order to do something about fluoroquinolone toxicity though.  She needs your story.  She needs your data.  Please give her the information that she needs in order to stop the absurd way that fluoroquinolones are prescribed.

On top of Dr. Golomb’s huge list of accomplishments, she’s an incredibly upstanding and ethical scientist who refuses to take money from the pharmaceutical companies.  She speaks out against the corruption of the medical system by entrenched conflicts of interest with the pharmaceutical industry.  Here are a couple of informative links about Dr. Golomb and her advocacy work –

http://thesciencenetwork.org/programs/beyond-belief-candles-in-the-dark/beatrice-golomb

http://articles.mercola.com/sites/articles/archive/2010/06/12/beatrice-golomb-interview.aspx

Dr. Golomb is moving medicine in the right direction.  She is calling out the pharmaceutical industry on the harm that their products are doing to people.  It is fantastic that a research scientist of her caliber has taken an interest in fluoroquinolone toxicity.  Please help her by completing the survey that is part of her study.

Sure, it will take a couple of hours and it’s tough to do with brain fog.  But it’s important.  It’s really, really, really important.

So, do it.  Please.  Thanks.

Also, the Hormones Matter / Lucine Health Sciences survey has enough respondents for the survey data to be analyzed.  Unfortunately, there isn’t enough money currently available to properly analyze the data.  If you would like to donate to the Hormones Matter / Lucine Health Sciences data analysis fund, please do so through this link – http://www.hormonesmatter.com/we-exceeded-research-goals-crowdfund-data-analysis/

THANK YOU!

 

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Adverse Drug Reactions are Like Earthquakes

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Here is a post about how adverse drug reactions are like Earthquakes –

http://www.hormonesmatter.com/adverse-drug-reactions-like-earthquakes/

Drugs, just like earthquakes, can shake your world and cause damage and destruction.

 

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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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