adverse events

What If We Are Wrong? Medication, Medical Science and Infallibility

Published on
6685 views
medical science versus sciencism

What if we are wrong? Such a simple question, but one that seems all but absent in modern medicine. Patients, particularly women, routinely present with chronic, treatment refractory, undiagnosed or misdiagnosed conditions. More often than not, the persistence of the symptoms is disregarded as being somehow caused by the patient herself. If the tests come back negative and the symptoms persist, then it is not the tests that are insensitive or incorrect but the patient. If the medication prescribed does not work or elicits ill-understood side effects, then somehow the patient is at fault. If the patient stops taking the medication because of said side-effects, then they are labeled non-compliant and difficult. The patient is always at fault. It is never the test, the disease model, or the treatment.

What if we are wrong? What if the tests to diagnose a particular condition are based on incorrect or incomplete disease models? What if a medication universally prescribed for a given condition doesn’t work or creates adverse reactions in certain populations of people? What if the side-effects listed are incomplete? Is it so difficult to admit that gold standards evolve or that medical science is fluid? Certainly, if a patient is presenting with a constellation of symptoms that create suffering and those symptoms do not remit with a given medication or medications and/or do not appear on the available diagnostic tests, why is it so difficult to consider that either the medication doesn’t work, the diagnostic was insufficient, or the diagnosis itself was incorrect? Why is it that we assume it must be a mental health issue or somehow the patient is causing the symptoms herself?

Here, one doctor tells how he learned that he was wrong about diabetes and metabolic disorder. He gleaned this not from a book or from his training and not from listening to his patients, but when he, a previously healthy young man, developed a metabolic syndrome that led to obesity and type 2 diabetes. It was by his own personal crisis that he began to question the model of diabetes and its relationship with obesity. Dr. Peter Attia asks:

What if we are wrong?

What if we are wrong, indeed. There are so many areas of medicine where we may be wrong; where we are likely wrong, but where no one is asking the question.

We congratulate Dr. Attia for his discovery, but why does it take a personal crisis for a physician to question the status quo? Why is there such fealty to particular disease classifications or disease models even when there is evidence to the contrary? Is it the nature of modern medicine to lay down guidelines and be done or is it simply human nature to resist the notion that we can be wrong? Maybe a combination of both; I don’t know the answer, but I do know that if one is certain of everything there can be no room for learning or discovery.

On the other hand, if we begin with the notion that humans, and thus, the structures humans create are fallible – that we do not know or understand everything – and if we add to that humility a dose empathy, perhaps then we can begin healing patients rather than managing them.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

Image by Carlos Lincoln from Pixabay.

This post was published originally on Hormones Matter in July 2013.

Related posts:

diet and responsibilityA Rant About Diet and Responsibility food composition and hyperglycemiaFood Composition and Hyperglycemia mammogram breast cancerMammography Screening – When an Educated Consumer Is Not the Best Customer the great lyme explosionThe Great Lyme Explosion

You might be interested in

Musings of a Heretic Patient: Floxed and Fed Up

Published on
3558 views
fluoroquinolone toxicity

After mulling it over for quite some time, I wanted to comment on something we all encounter much too frequently in our floxed lives. That is, specifically, the negative experiences we are often forced to endure with our doctors. As patients, harmed by a widely over prescribed drug, we are often dismissed whenever we propose a connection between fluoroquinolones and the adverse side effects we experience as their patients.

I cannot even begin to quantify the level of frustration and anger I feel whenever I’ve been confronted with this in my doctors visits. It’s demeaning and demoralizing to be treated as if I am a complete moron for broaching the subject whenever they come up empty on their diagnosis.

At first I chalked it up to ego because after all, THEY are the “experts” and I am just one of the great uneducated with the audacity to question their expertise and search for answers beyond their own. I know what it feels like to be sneeringly, denigrated for my research. To be called a GOOGLE doctor for simply not accepting their non-diagnosis as a diagnosis.

Oh, the times I felt like screaming and pulling my hair out in my doctor’s office. The times I became so frustrated I wanted to overturn the tables and rip those stupid charts from the walls are just too innumerable to count on my flox journey.

Laying the blame on ego alone was the simplistic answer but something always niggled at me every time I left the office, depressed and defeated.

Why was I always making excuses for what was so obviously a rude and demeaning attitude towards my quest for answers? Why were all my doctors so hostile to my input and so dismissive of my efforts at educating myself? What lay beneath this dismissal of my pain and the destruction of my body that even they could not deny?

Today it happened again and it sparked me into writing this post.

The Heresy of Questioning a Doctor

I have come to learn that a few of the common tactics used by doctors can be identified. Many of them are being used to work against us when confronting a doctor’s assessment of our specific issues.

The first one is utilizing our lack of a formal medical education to minimize our efforts. It’s the most obvious use of the power dynamic they conjure to silence us. Questioning a doctor is an anarchistic act. It challenges the authority of the empirical medical model, the one we’ve been programmed from childhood to believe has all the answers. The one domain that is so sacrosanct in our society that questioning it is bordering on the heretical and places you squarely outside the acceptable behavior circle.

I have come to accept that I am now a heretic and so is anyone who steps outside the medical status quo in their search for answers. Like any heretic, I need to be prepared for the onslaught of disapproval and derision I might receive for questioning the medical gods. I need to remember to arm myself psychically and mentally for every visit. The fact that I must do this saddens me. It illustrates just how meaningless and hollow the Hippocratic Oath has become to our modern medicine men.

“Nor shall any man’s entreaty prevail upon me to administer poison to anyone; neither will I counsel any man to do so.”

Plausible Deniability in Medicine

Another tactic used by physicians to dismiss patient concerns is plausible deniability. Physicians now rely on plausible deniability to explain away their non actions or worse. It is the deliberate and destructive act they use against the very people they have sworn to heal. It’s also known as covering their asses. Knowing this and accepting that this is the norm rather than the exception has been a bitter pill for me to swallow but imperative to retaining my sanity.

And Then There is Gaslighting

Another thing I’ve come to recognize as a tactic is what I call medical gaslighting. Gaslighting is a very effective but abusive form of diversion. In this case, a physician utilizes an established (though questionable) psychological diagnosis as a convenient way of absolving their non actions in your case. It also serves to stopgap any further digging into causal links and diverts attention away from the physicians own culpability. How many times have I been told that my symptoms are all in my head? Too many times to count. And since my symptoms don’t fit any known disease model, I must be suffering from a psychological malady.

This has now become a part of the DSM-5 lexicon of psychiatric diagnosis and poses further harm to people like myself and anyone whose symptoms cannot be easily pinpointed to any one specific disease. If anyone, who like myself has been previously diagnosed with a mental illness (depression, PTSD) these diagnoses further serve to de-legitimize the patient’s experience.

We need to be aware that even when we have the hard evidence of medical research to back up our claims, we will be challenged and possibly labeled. If we refuse to accept this knee jerk assessment or the drugs they will inevitably prescribe to treat our “real” issues we might find ourselves tagged with the non-compliant stamp.

I write this as a warning to everyone who finds themselves on this page. You might hit some very daunting, brick walls along this journey but know that you are not alone. One day we will be vindicated, this crime will be exposed, and Big Pharma and all colluding physicians and corrupt governmental agencies will be brought low.

For those who have been blessed with that one special physician who listens and learns, I am grateful to see that ethics still exist. It’s heartening to know that there are doctors out there who can put ego and material gain aside and remain open to their patient’s body awareness and desire for healing. Sadly, those doctors risk becoming medical heretics too, banned and derided by the more conventional experts, the same experts that employ the tactics listed above.

In the end, I know we will win and a big part of that victory comes from the massive amount of support and experience we find on our support pages. Thank you to all my fellow floxies. You are the vanguards of this battle and close to my heart.

We Need Your Help

Hormones Matter needs funding now. Our research funding was cut recently and because of our commitment to independent health research and journalism unbiased by commercial interests we allow minimal advertising on the site. That means all funding must come from you, our readers. Don’t let Hormones Matter die.

Yes, I’d like to support Hormones Matter.

This post was published originally on Hormones Matter on October, 2015.

Related posts:

adverse drug reactionsAdverse Drug Reactions (ADRs): We’re ALL at Risk floxed earth fluoroquinolones environmentThe Earth is Floxed cipro vision problemsA Fluoroquinolone Reaction After Just One Pill

You might be interested in

Are Women More Sensitive to Pain? Hormones and Pain Killers

Published on
2758 views
women and pain

Are women more sensitive to pain? The question has been bandied about for years. Study after study answers affirmatively. Yes, women are more sensitive to pain. Not only that, women experience more pain than men for similar injuries and require more pain medication to achieve the same level of relief. And oh, by the way, for some strange reason, women suffer from more abdominal pain than men.

The question itself is encumbered with an all-knowing cultural and political ennui that subsumes the very possibility of an accurate answer. Instead it directs us toward the expected, and ultimately, uninteresting psychosocial babble; of course, women are more sensitive to pain, let us simply count the ways. While it is true that women do indeed require more pain medication than men and suffer from more abdominal pain than men, it rarely seems to occur to those conducting this research to re-frame the question from the tacit approbation of female ‘sensitivity’ to why might women require more pain medications than men. What is it about the medication or the female physiology that renders pain medications insufficient in women. Well, let me count the ways.

Pain Medications Designed by Males, for Males, with Males

Exclusive of the pain medications discovered accidentally, like the early opium-based or morphine derivatives on which no research was ever conducted, most pain medications developed in the 20th century were never tested on women. Indeed, women were prohibited from being included in clinical trials until 1993-1998. (Instead, we simply gave women the meds and hoped for the best). Even post 1998 when the new regulations were implemented to permit women in clinical trials, there were no requirements for drug developers to analyze the data based on sex and determine if a particular medication worked better or worse in women or even if the medication had more or different adverse events for women. As a result, many researchers have noted that women suffer disproportionately more adverse events per capita than men and that those adverse events are often quantitatively more serious. For more details, see: Women in Clinical Trials – So That’s Why My Meds Don’t Work. 

Even in early medication development, the animal research, uses males to develop and test the efficacy of a particular medication. A recent report suggests that 79% of all animal studies published over a 10 year period in the journal Pain, were done on male rodents. Only 8% used both males and females and only 4% tested the response differences between males and females. As the comments in this pain post suggest, testing on female rodents is expensive and difficult because of the animal’s estrus cycle (menstrual cycle for humans) – e.g. the hormone changes are rapid and complicated. It’s much easier and less costly to measure in male rats.

I would argue, adverse events in human females are exponentially more costly and difficult than conducting the appropriate research early in development. However, with the exception of the class action fines that pharmaceutical companies pay, it is not often that the pharmaceutical company – the drug developers – must bear the brunt of the early research costs or even bulk of the adverse event costs. Rather, it is governmental agencies that fund early stage research and insurance companies, governmental and private, respectively, who pay for the negative outcomes. With this bit of a misalignment that means no one pays for or is accountable for, what perhaps, could be avoided, if funds were allocated in the earlier testing phases.

Given that so few pain medications were developed using females (rodent or human), it is entirely possible that many pain medications simply do not work as well or even by the same mechanisms in females versus males. There is some evidence that this is true. Researchers have noted that while standard morphine type medications (opioid agonists) don’t work as well in women as in men, other medications appear to work better, such as the opioid agonist-antagonist butorphanol or pentazocine – pain killers that work on different types of receptors and by different mechanisms.

Female Biochemistry, Pharmacokinetics and Pharmacodynamics

What is it about the female physiology that makes some medications less effective than when given to males?  Well, to state the obvious, females are genetically, physiologically, structurally and biochemically different than males. Why would anyone presuppose that placing a compound into two discretely different environments would exact the same response? And yet, that is exactly what we do.

Drug disposition is sex-specific. How a drug moves through the body (pharmacokinetics)and what effects it elicits (pharmacodynamics) are determined by number of factors, most of which differ significantly in males and females. In one of the better written reviews of Sex Differences in Drug Disposition, researchers note that even in the few studies with sex-analytics, it is clear that women process drugs differently than men.

  • Drug transit through the GI tract is considerably longer in women than men (91.7 hours versus 44.8 hours).
  • Bile acid composition is different and acidity levels are different
  • Women show a higher maximum dose and AUC 87% and 71% of the time
  • CYP enzymes (the enzymes that break down drugs in the liver) vary with some variants consistently increased and others decreased by sex.
  • Food by medication interactions vary directionally by sex – that is they are not consistent, some increase metabolism, some decrease metabolism
  • Sex differences in kidney function
  • Sex differences in liver function
  • Sex differences in pain and opioid receptor density and activity
  • Women exhibit different pharmacodynamic profiles for a wide array of drugs
  • Cycling hormones dynamically change drug metabolism (pharmacokinetics) and drug effects (pharmacodynamics); pregnancy hormones change these drug parameters even more radically

Bottom-line, women are different than men. Existing medications need to be tested in women to see which ones work and which ones don’t, and then, prescribed accordingly. New medications should be developed for these differences. (Imagine, a whole new market by simply recognizing the obvious differences in the population). For medications already in development, sex analytics must be conducted before the drug is released.

Are women more sensitive to pain? Probably not, but we have different types of pain (frequently, undiagnosed or misdiagnosed and chronic) and respond differently to pain medications than men.

We Need Your Help

Hormones Matter needs funding now. Our research funding was cut recently and because of our commitment to independent health research and journalism unbiased by commercial interests we allow minimal advertising on the site. That means all funding must come from you, our readers. Don’t let Hormones Matter die.

Yes, I’d like to support Hormones Matter.

This article was published originally on Hormones Matter on June 27, 2013.

Related posts:

hormones brain genderSynthetic Hormones During Pregnancy and Gendered Brain Development women in clinical trialsWomen in Clinical Trials

You might be interested in

Dear Epidemiologists, Consider Fluoroquinolones

Published on
3957 views
fluoroquinolones

Dear Epidemiologists,

I am writing to encourage you to study the long-term and intergenerational adverse-effects of fluoroquinolone antibiotics (Cipro, Levaquin, Avelox, Floxin, and their generic counterparts). It has been noted by both patient groups and the FDA that fluoroquinolones have long-term adverse-effects, yet many patients and physicians are caught off-guard when fluoroquinolone toxicity symptoms are not transient. Fluoroquinolone toxicity symptoms are similar to those of many multi-symptom, chronic, mysterious diseases of modernity, and epidemiological studies are needed in order to determine if the similar symptoms are coincidental, or if they are indicative of a causal relationship between fluoroquinolone use and many of the diseases that fluoroquinolone toxicity resembles.

The Acknowledged Adverse-effects

The musculoskeletal adverse effects of fluoroquinolones are well-known, and fluoroquinolone antibiotics even carry a black box warning noting that they increase the risk of tendon ruptures. Studies have shown that fluoroquinolones also increase the risk of retinal detachment, and a recent (2015) article in JAMA Internal Medicine noted that the risk of aortic aneurysm and dissection is increased with fluoroquinolone use. All these adverse effects point to fluoroquinolones causing collagen synthesis disorders and/or collagen toxicity.

The 2015 BMJ Open article, “Fluoroquinolones and collagen associated severe adverse events: a longitudinal cohort study” goes over the increased risk of tendon ruptures, retinal detachment and aortic aneurysm and dissection in those given fluoroquinolones. The authors conclude that:

“Current fluoroquinolone use was associated with an increased hazard of tendon rupture (HR 3.13, 95% CI 2.98 to 3.28), and increased hazard of aortic aneurysms (HR 2.72, 95% CI 2.53 to 2.93). The relative hazard of these two collagen-associated adverse events were slightly attenuated after multivariate adjustment, but remained clinically meaningful and statistically significant (table 2). The relative hazard of retinal detachment was modest in magnitude, and only statistically significant after multivariate adjustment (table 2). The magnitude of the association of fluoroquinolones and aortic aneurysm events was stronger than the association observed with other aneurysm risk factors such as hypertension and atherosclerosis (table 3).”

Longer-Term Studies are Needed

“Fluoroquinolones and collagen associated severe adverse events: a longitudinal cohort study” is an excellent study, and I commend the authors for their work. However, a couple of drawbacks of it are that the authors only look at patients who are over the age of 65, and the time-period examined is only 30-days post-exposure, though many fluoroquinolone toxicity patients are under the age of 65, and many experience adverse effects months, or even years, after exposure to the fluoroquinolone.

It would be helpful for both patients and physicians if similar studies were conducted looking at the long-term health outcomes for people of various ages after exposure to fluoroquinolones.

Collagen-synthesis Problems and CNS Symptoms

The relationship between other diseases that have to do with disordered collagen synthesis and fluoroquinolone use should also be examined. For example, fluoroquinolone adverse-effects include many central nervous system symptoms, including convulsions, toxic psychosis, suicidal ideation, dizziness, confusion, tremors, hallucinations, depression, anxiety, insomnia, and many other psychiatric symptoms. It is possible that the collagen in the central nervous system is adversely affected by fluoroquinolones, and that fluoroquinolone use is associated with the rise in psychiatric illnesses in the population. It is a hypothesis that should be explored.

Fluoroquinolones and Multi-symptom, Chronic Illnesses

Many patients who have adverse reactions to fluoroquinolones suffer from multi-symptom, often chronic, illness. Fluoroquinolone toxicity has symptoms that are similar to those of autoimmune diseases (including lupus, rheumatoid arthritis and M.S.), neurodegenerative diseases (including ALS and Parkinson’s), and mysterious diseases like fibromyalgia and M.E./chronic fatigue syndrome, and the symptoms often overlap with those of chronic Lyme disease. (Some patient stories that go over the symptoms of fluoroquinolone toxicity can be found on www.fqwallofpain.com). It would be helpful if some epidemiological studies were done to see if fluoroquinolone exposure predisposes people to a diagnosis of an autoimmune, neurodegenerative or other mysterious diseases.

Those who have experienced fluoroquinolone toxicity see the connections between fluoroquinolones and those diseases—because we went from being healthy to suddenly being sick with symptoms of multiple chronic diseases shortly after taking a fluoroquinolone—but our experiences are only anecdotal unless studies confirm our assertions. Epidemiological studies to determine whether or not there is a connection between fluoroquinolone use and autoimmune, neurodegenerative and mysterious diseases would be immensely helpful in showing whether the relationship is causal or anecdotal.

Fluoroquinolones and Diabetes, Heart-disease, and Autism

Fluoroquinolones have been shown to cause dysglycemia and use of fluoroquinolones is correlated with type-2 diabetes. Diabetes is a growing problem that is causing pain and suffering to millions of people worldwide. If even a small percentage of diabetes cases could be prevented through more prudent use of fluoroquinolones, much pain and suffering could be alleviated. Quantifying the relationship between fluoroquinolone use and diabetes via an epidemiological study would be immensely useful.

Given that fluoroquinolones have been shown to increase incidence of aortic dissection and aneurysm, it would be interesting to see if they are associated with heart-disease more generally.

It was noted in the 2013 article in Nature, “Topoisomerases facilitate transcription of long genes linked to autism” that, “chemicals or genetic mutations that impair topoisomerases, and possibly other components of the transcription elongation machinery that interface with topoisomerases, have the potential to profoundly affect expression of long ASD (autism spectrum disorder) candidate genes.” Since fluoroquinolone antibiotics are the most commonly prescribed topoisomerase interrupting drugs, it is worthwhile to look into whether or not they are related (intergenerationally, most likely) to autism.

Longer-Term Studies are Needed

It has been known for many decades that fluoroquinolones have serious and severe adverse-effects, yet very few studies of the long-term effects of fluoroquinolones have been conducted. Fluoroquinolone affected patients have been noting that they have experienced fluoroquinolone toxicity symptoms months, or even years, after administration of the drugs has ceased, and even the FDA has noted that fluoroquinolone associated disability (FQAD) is a consequence of fluoroquinolone use. However, fluoroquinolone studies have primarily concentrated on adverse-effects that occur while the drug is being administered. Long-term, and even intergenerational, epidemiological studies will enlighten us to the true consequences of fluoroquinolones.

Many Questions to Study

How much does fluoroquinolone use increase a person’s risk of getting an autoimmune disease? How much more likely is a person to become diabetic if they use a fluoroquinolone to treat a sinus infection? How much more likely is a person to need a pain medication like Lyrica if they have been prescribed a fluoroquinolone in the past? Are thyroid diseases more common in those who have taken fluoroquinolones than in those who haven’t? Are psychiatric illnesses more common in those who have taken fluoroquinolones? Are people more likely to suffer from heart-disease if they have taken a fluoroquinolone? Are there any intergenerational effects of fluoroquinolones, and, if so, how are they manifesting?

These are all reasonable questions to ask, given the long list of adverse-effects caused by fluoroquinolone antibiotics.

Patients have been screaming about the connections between many of the diseases of modernity and the symptoms of fluoroquinolone toxicity for years, but our screams will only be heard if there is data to back them up. Studies need to be done to get necessary information, so I encourage all scientists who have the access to data and expertise needed, to study fluoroquinolones. People are being hurt by these drugs. Information, data, science and a bit of enlightenment, will help to encourage more prudent and appropriate use of fluoroquinolones, so that the pain caused by them can be minimized.

To all the scientists who have studied fluoroquinolones—your work is appreciated and I hope that it is built upon. Thank you in advance to all those who look further into fluoroquinolone adverse reactions. Your work will be greatly appreciated as well.

Regards,
Lisa Bloomquist
Patient advocate and founder of Floxiehope.com

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

Photo by Aaron Burden on Unsplash.

This letter was published previously on Hormones Matter in December 2015.

Related posts:

beyond the ER with FQWhen Investigating Fluoroquinolone Reactions, Move Beyond the ER Perception in health and diseasePerception: The Key to Disease keto basicsKeto Dieting: Understanding the Basics thiamine limbic systemHow Can Something As Simple as Thiamine Cause So Many Problems?

You might be interested in

Medication Safety and Efficacy Studies: Share Your Experience

Published on
2292 views
drug warning labels

Is this Medication or Vaccine Good for Me?

That is the question on everyone’s mind; is this medication good for me? How does one decide? The mandated medication package inserts tell one story. The online drug reaction and interaction lists are long and complicated. Adverse events data are incomplete and patient stories reflect individual reactions. Where are the reports that put numbers to the side-effects and adverse reactions? Where are the real world data that show risks for patients of different age groups, men versus women, or on multiple medications? Lucine Health Sciences and Hormones Matter are collecting those data and you can help.

Understanding Side Effects

While we cannot make your medication decisions for you, we can collect more complete side-effect data from patients like you, from around the world and we can offer those data reports to patients, physicians and industry. We think everyone deserves to know the frequency, severity, and chronicity of side-effects. We think everyone deserves to know whether a the benefits of a medication or vaccine outweigh the risks. Don’t you?

How You Can Help

Take a Health Survey

Take a few minutes to complete a survey about the medications and surgical procedures you have utilized. Take as many health surveys as are applicable and share the surveys with your friends. All surveys are anonymous and completely voluntary. We’re adding more surveys every month, so check back frequently or sign up for our weekly newsletter to keep abreast of the latest research news.

Take one of our health surveys:

Fund the Fight – Support Research

Lucine Health Sciences and Hormones Matter, are unfunded and are run by Dr. Chandler Marrs along with a cadre of dedicated volunteers. We know the work we do is important and needed and so we’re doing it anyway, despite the lack of funding. We’re bootstrapped to the nth degree*, but determined to fill the critical data void in healthcare, one study at a time.

We’ve set up an unsubscription model to fund our education and research programs. We call it an unsubscription because it is not really a subscription in the true sense. It’s just a mechanism to fund the work that maintains our commitment to open access health information on Hormones Matter.  By purchasing an unsubscription you are supporting our continued operations and research; research and health information we all need but can’t get anywhere else.

Buy An Unsubscription Now

$12.00 per year – $1.00 per month




 

$60.00 per year – $5.00 per month




 

$120.00 per year – $10.00 per month




 

$240 per year – $20.00 per month




 

Contribute Other Amount




 

Hormones Matter – Legal Structure

Hormones Matter is the health media arm of Lucine Health Sciences. We leverage the broad educational and social media reach of Hormones Matter to crowdsource critical, direct-to-patient research. Lucine is a C-corporation by federal standards, a B-Corp (for benefit corporation) in the state of Nevada. What this means is that any money you contribute, either through the donate or the subscribe buttons, is not tax deductible; for that we would have to be a not-for-profit enterprise.

For more information about our research philosophy, data ethics commitment or business model, follow the links or just click on our home page: Lucine Health Sciences and snoop around.

If you’d like to support or commission a study on a specific medication or surgical procedure, we can do that too. Simply contact us here.

Lucine neither collects nor distributes personally identifying patient information, see our Ethics and Privacy for more details. We will, however, publish trended reports for open access and custom reports for industry. For more information, see Research Services.

  • In February of 2016, Lucine received a grant to conduct a multi-phased study on the risks for blood clots with hormonal birth control. All other research remains unfunded.

Related posts:

medication safetyNo Medication is Perfectly Safe

You might be interested in

When Did it Become Okay to Disregard Patient Pain?

Published on
3687 views

Fibromyalgia, Chronic Fatigue Syndrome / M.E., Gluten Intolerance / Celiac Disease (or other dietary intolerances), Lyme Disease, depression, anxiety and every disease that is brought on by an adverse reaction to a drug or vaccine, is very difficult to diagnose and treat. Individuals with these diseases are often disregarded and treated as if they are making up their symptoms, or choosing to be sick, or as if they are crazy, which leads me to the question – When did it become okay to disregard patient pain and suffering?

I was at a dinner party recently where a gentleman was expressing an incredulous attitude about gluten intolerance. He stated that bread has been around for thousands of years and that people have been dealing with it just fine for all that time. He didn’t see how people could suddenly start having trouble digesting gluten. This simplistic attitude fails to take into account the facts that both our bread, through GMO wheat, pesticides and processing, is different now, and that our digestive systems, because of rampant use of antibiotics, are also different now. Regardless of the causes of gluten intolerance, it is not something that you can believe in or not. People have experiences of feeling ill when they eat foods that contain gluten. To disregard their experience and to tell them that what they feel is not valid, is inexcusably arrogant and rude. Sadly, that is exactly what happens too often in healthcare today. Symptoms that are not easily understandable, recognizable by modern diagnostic tools or treatable by the medications currently available, are disregarded, and worse yet, attributed to the patient’s own mental health weakness.

The Myth of Modern Diagnostics

Perhaps disregard and disbelief emanates from the notion that if a disease isn’t detectable and it isn’t treatable, then it doesn’t exist. When pain, a disease, physical or mental dysfunction of one sort or another, is felt intensely by the patient but its source is undetectable using the methods of modern medicine, it easier to deny that the problem exists than search for solutions. Rather than question the detection methods, the diagnostics, or say “I don’t know,” many doctors, family and friends deny that there is a problem at all. The mysterious, difficult to treat illnesses is attributed to a mental health flaw or personal weakness.  It’s “all in their head,” is a common refrain; as if what is in your head is a choice or isn’t important.

It Gets Worse

For those of us with illness caused by a drug or vaccine, having our pain and suffering acknowledged is difficult at best.  Our symptoms are typically invisible and mysterious, and when we tell people about the cause of our illness we are often treated with hostility. It is as if in telling our stories about how we were hurt by a pharmaceutical, we are trying to dismantle the entire modern medical system and get rid of the good with the bad. I have experienced this repeatedly since my adverse reaction and subsequent injury from Cipro. My experience is not uncommon. Read any of the patient stories of post-Gardasil, post-Lupron or post-fluoroquinolone injury – we all suffer, and we are often treated poorly.

When one speaks out against a travesty in the medical system, he or she is often accused of being a conspiracy theorist, anti-vaccine or anti-science, even though medication interactions, errors and adverse events are the 4th leading cause of death in the U.S. There are few shades of grey. One is either pro-medicine, science, vaccine or drug, or on the lunatic fringe. This characterization is unfair, as many victims of adverse reactions to prescription drugs or vaccines thoroughly believe in the efficacy of the Scientific Method, we just dislike being an experiment gone awry.

For those who have not been harmed by a medication or vaccine, it is difficult to imagine. How could a drug that is prescribed all the time, a drug that also does some good (or it wouldn’t be prescribed), have caused such harm? How could a drug or vaccine lead to such chronic pain or illness? It is difficult to conceive. It is difficult to reconcile. Egos get involved and shackles get raised. How dare a patient, a victim, a normal person, accuse a doctor, an expert, of doing harm? What doctors don’t recognize is that we are not meaning to accuse, we are seeking help, compassion and understanding.

When Did It Become Okay to Disregard Patient Pain and Suffering?

I suspect it happened during the debate over whether or not vaccines contribute to Autism. Somewhere during that debate, which is yet on-going, it became okay to tell people that it was impossible for drugs or vaccines to cause the horrifying plethora of side-effects that they do indeed cause. It became okay to believe, despite the long list of adverse effects that accompany each pharmaceutical, that medicines and vaccines where somehow entirely safe; that because they didn’t cause ill-effects in all patients, they couldn’t cause them in some.

It’s not okay.

Drug and Vaccine Side-Effects Happen

They are serious and they should not be ignored.  Please have some compassion for the victims of adverse reactions to drugs and vaccines. Please listen to their stories and realize that they know their bodies and conditions better than anyone else. Please treat them with kindness, respect and love. They deserve no less. Most importantly, do the research necessary to find out how and why these adverse event occurred and then develop the appropriate solutions to heal these patients. Better yet, invest in safer, more personalized vaccines and medications that are only given to those who will benefit from them.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

Related posts:

beyond the ER with FQWhen Investigating Fluoroquinolone Reactions, Move Beyond the ER

You might be interested in

Crowdsourced Women’s Health Research

Published on
20575 views
women's health research

A dirty little secret in the world of women’s health – there are relatively few data guiding medical decision-making. Indeed, across all medical specialties the auspices of evidence-based are crumbling quickly in the face of open access and open science. Recent reports suggest less than 50% of all medical treatments have any data to support their efficacy. Of that evidence, much could be suspect given the rampant payments from pharmaceutical and device companies to physicians and other decision-makers, plus the well-documented publishing bias and even fraud plaguing the scientific publishing industry.

In women’s health, matters are even worse. Not only are evidenced-based, clinical practice guidelines nearly non-existent in Ob/Gyn (only 30% of practice guidelines based on data) and women still not included in early stage clinical trials in sufficient numbers, but regulatory agencies do not mandate gender analytics for new medications. The result,  post market adverse events – think death and disabling injury – are more common in women than men.

Why do women die and suffer from adverse events at a much higher rate than men?  Because most medications reach the market without having ever done the appropriate testing or analytics to distinguish why women might respond to said medications differently than men. Even in the lab, male rodents are used about 90% of the time.

What about medications developed specifically for women? These too are poorly understood, mostly because the outcome variables are not focused on the totality of women’s health. For example, it is important that oral contraceptives prevent pregnancy, but it is equally important that they don’t cause blood clots, stroke, heart attack or cancer. And if blood clots, stroke, heart attack or cancer are deemed acceptable risks for birth control (and I don’t think they are), then shouldn’t we know which pills are the most dangerous and which women are most at risk?

One cannot manage, what one does not measure and we don’t measure critical components of women’s health. We also don’t track adverse events or side-effects very well. Question: have you ever reported a side-effect to a doctor? Do you know if he/she reported it to the FDA, the CDC or any other adverse events registry?  Probably not, and that is the problem.

If you knew you had a 20 times higher risk of stroke or heart attack for one medication versus another, would you choose differently? I bet you would, but as medical consumers, we don’t have that information. In many cases, those data don’t exist.

That’s where crowdsourced research comes in. At Lucine, the parent company of Hormones Matter, we think the lack of data in women’s healthcare is unacceptable. We know that the larger companies who sell these products have no motivation to gather or make public these type of data – too many billions of dollars are at stake – and so, it is up to us, the women who need safe health products, to be the change agents.

The simple act of completing surveys on critical topics in women’s health can and will save lives. Your data will tell a story. Add that to the data from hundreds, and hopefully thousands of other women, from all over the world and from all walks of life and we will be able to determine which medications, devices or therapies work, which ones don’t. We can give women the information needed to make informed medical decisions.

We are currently running four women’s health surveys, but plan on running many more. So check back regularly. If you qualify for any or all, take a few minutes and add your data. If you don’t qualify for these, share these surveys with your friends and family through social media. The more data we can gather, the more clear our medication choices will become.

Health Surveys for Real Women

Oral Contraceptives Survey

Oral contraceptives (birth control pills) are used by 98% of the female population at some point in their lives. They are prescribed for a myriad of reasons unrelated to pregnancy prevention. Sometimes they work; sometimes they don’t. Wouldn’t it be nice if we knew which brands of birth control pills worked for which conditions? Better yet, wouldn’t it great if we could avoid the pills that didn’t work, made a particular condition worse or had a higher than average side-effect profile? Take this survey if you have ever used oral contraceptives. Help determine which birth control pills are safest and have the fewest side-effects. You may save another woman’s life and health.

The Hysterectomy Survey

By the age of 60 one in three women will have had a hysterectomy. Hysterectomy is one of the most common surgical procedures for a range of women’s health conditions. For some conditions, hysterectomy works wonders. While, for other conditions it is only nominally successful. The purpose of the hysterectomy survey is to learn more about why hysterectomy works for some women’s health conditions and not others. We’d also like to learn more about the long term health affects of hysterectomy – does a woman who has had a hysterectomy have a higher or lower risk of other health conditions? Take this survey and help improve women’s health.

The Gardasil Cervarix Survey

Women and their physicians need more data about the side-effects of the HPV vaccines, Gardasil and Cervarix. There is a lack of data about who is at risk for adverse events and whether certain pre-existing conditions increase one’s risk for an adverse event. There is also a lack of data about the long term health effects of these vaccines. The purpose of this survey is to fill that data void; to learn more about the risks for, and nature of, adverse events associated with each of the HPV vaccines, Gardasil and Cervarix. Take this survey and help improve women’s health options.

The Lupron Side Effects Survey

Leuprolide, more commonly known as Lupron, is the GnRH agonist prescribed for endometriosis, uterine fibroids or cysts, undiagnosed pelvic pain, precocious puberty, during infertility treatments, and to treat some cancers. It induces a menopause like state stopping menstruation and ovulation. It’s widespread use for pain-related female reproductive disorders such as endometriosis or fibroids is not well supported with very few studies indicating its efficacy in either reducing pain or diagnosing endometriosis or other pelvic pain conditions. Conversely, reports of safety issues are mounting, especially within the patient communities. The Lupron Side Effects Survey was designed to determine the range, rate and severity of side-effects and adverse events associated with Lupron use in women.

All surveys are anonymous and participation is voluntary. More information about individual surveys can be found: Oral Contraceptives Survey, The Hysterectomy Survey, The Gardasil Cervarix HPV Vaccine Survey.

Visit our Take a Health Survey page for new surveys and updates or better yet, sign up to receive our weekly newsletter for all the latest research and hot topics pertaining to women’s health.

 

 

 

Related posts:

women in clinical trialsWomen in Clinical Trials

You might be interested in

yaz

Why Does Yaz Get a Pass?

In the early days of hormonal birth control, many physicians and politicians seemed extraordinarily indifferent to the side effects linked

New Program for Patients to Report Medical Errors

Published on
1631 views

Medical error represents the sixth leading cause of preventable death and disability in the United States. Understanding and ultimately reducing the number of medical complications, mistakes and unsafe practices requires an easy and effective program for reporting these types of events. It is nearly impossible to improve upon or even manage what is not measured consistently.

Until recently, there was no mechanism for a patient or a patient’s family to report an adverse event, a mistake or complication from his or her medical care or hospitalization (a few private sector, direct-to-consumer, medication adverse events registries have sprung up recently). Since only physicians and other healthcare providers could make those reports, and because reporting is voluntary, those data have not been reported consistently.

The Obama Administration and the Agency for Healthcare Research and Quality announced a new federal pilot program that allows patients to report medical mistakes or unsafe practices directly to a registry.The data will then be analyzed by independent data analytics and healthcare experts to determine trends and recommend improvements.

According to the New York Times, the new registry will ask patients what happened, the details of the event and try to ascertain the cause of the event by asking about the contributing factors such as:

  • “A doctor, nurse or other health care provider did not communicate well with the patient or the patient’s family.”
  • “A health care provider didn’t respect the patient’s race, language or culture.”
  • “A health care provider didn’t seem to care about the patient.”
  • “A health care provider was too busy.”
  • “A health care provider didn’t spend enough time with the patient.”
  • “Health care providers failed to work together.”
  • “Health care providers were not aware of care received someplace else”

The administration hopes these data can be used to reduce medical errors, improve patient safety and medical outcomes and ultimately, save money.  While some physicians worry that patients are not sufficiently educated to understand the differences between an expected complication and a medical error, others laud the wealth of information and data that will be gathered.

As a family member of a patient who experienced multiple, life-threatening, medical errors and unsafe practices during a particular hospital stay, I think it’s about time.  What do you think?

 

Related posts:

Lupron for Precocious Puberty: Parents and Patients Speak Out physician burnoutA New Medical Model To Prevent Physician Burnout

You might be interested in

1 2