December 2013

Fetal Rights Versus Maternal Rights: The Slippery Slope of Personhood

3771 views

Perhaps you’ve seen the case of Erick and Marlise Munoz, who reside in Tarrant County, Texas. Marlise is comatose due to a pulmonary embolism and is on life support because she is pregnant. In previous conversations, Marlise had expressed to her husband that she wouldn’t want to be on life support should she become comatose. These wishes, and the wishes of her husband, are being disregarded by the hospital. Current laws in Texas protect fetal rights over the rights of the mother; this means that Marlise will be kept alive until her child can be delivered safely, even though neither she nor her husband desired this outcome. This baby may face many developmental challenges because Marlise has been deprived of oxygen, so Erick will be facing another hurdle.

I had thought that the missing safeguard for the Munoz couple was a living will, which many younger people assume is for senior citizens; that if Marlise had a living will expressing her wish to be removed from life support, she wouldn’t be kept alive. Wrong. Texas law has the authority to void a living will in the interests of keeping a fetus alive. However, this point differs from state to state.

This case accentuates the importance of having a living will at any stage in life, senior or not, as well as discussing your wishes about being kept on life support with your family or partner. However, even a living will may not protect your wishes if you happen to become pregnant; this depends upon which state you reside in.

When did the rights of an unborn child become more important than the rights of the mother, and what is the desired outcome of the fetal rights movement? The term “fetal rights” applies the same legal protection to fetuses as children, meaning that mothers can be imprisoned and sentenced for decisions they made while pregnant that may have endangered the life of the fetus. And, as Vince Beiser of Mother Jones writes, “such tactics may be paving the way for abortion – the ultimate violation of “fetal rights” – to legally be declared murder.”

Take, for instance, the case of Sally DeJesus, a woman residing in North Carolina, profiled in the Mother Jones article “Fetal Abuse”, who briefly relapsed into drug addiction while pregnant, but still sought treatment and delivered a healthy baby. Because she admitted her mistake of using drugs while pregnant to healthcare workers out of the desire to keep her baby healthy, she’s now facing up to three years in prison.

Women’s rights advocates are concerned because this could mean that people struggling with addiction while pregnant won’t seek help because of these legal penalties, and will further endanger their own health and the health of their unborn children. Furthermore, this law penalizes women who use illegal drugs and ignores women who may be endangering their fetuses with legal substances, such as cigarettes or alcohol. If the goal is to protect unborn children from irresponsible or uninformed mothers, it is a sloppy one. It also appears to lead more women into the prison system rather than a system of supportive rehabilitation. If the state cares about the lives of the unborn children it claims to protect, it won’t lead them to have mothers in prison with untreated addiction problems.

What we’re left with is a mass of sticky questions. If the state has the right to keep someone alive against their will and the wishes of their family, who has to foot the hospital bills? Since the Munoz family would not have chosen to deliver the child now being kept alive by the hospital, who will pay for the care of the child that will likely face developmental challenges due to oxygen deprivation? Who is responsible for the child when the state decides life or death?

The fact that the state of Texas can overlook a living will to preserve the life of a fetus also raises the question of how far that can go. What’s the point of making a living will if the state can override it? If the state’s interest is in preserving life at all costs, why honor the “do not resuscitate” clauses at all? Presumably this won’t happen, because the lives of unborn children seem to be more important than the adults responsible for them.

In states where fetal rights advocates have passed legislation, people, especially women who are or may become pregnant, find they don’t get to choose how they live or die. If they’re struggling with addiction, they may further endanger their own lives to stay out of prison for endangering the fetus, rather than seek medical help. Furthermore, certain cases in Alabama and Mississippi are toeing the line for prosecuting women who’ve miscarried due to illegal drug use. Clearly these laws are being put in place to establish personhood for fetuses so that abortion laws can be challenged. That leaves pregnant women in certain states faced with the possibility of jail time for miscarrying, depending on certain factors. Abortion may be legal, but endangering the life of an unborn child, sometimes unintentionally, may become illegal. It’s a frightening state of affairs when the life of a fetus becomes the keystone of determining what happens to the life of a woman. Think of Ireland’s draconian anti-abortion laws and how they led to the 2012 death of Sita Halappanavar, who died while under hospital care because she was refused a badly needed abortion during a life-endangering miscarriage. Sita’s life ended because it was deemed that her fetus, which had already died, was more important than Sita’s own life.

 

How I Lost my Faith in Scientists

3348 views

On December 21, 2013, The Huffington Post published an article entitled “Americans Have Little Faith in Scientists, Science Journalists: Poll.”  The article noted that, according to a HuffPost/YouGov poll, “only 36 percent of Americans reported having ‘a lot’ of trust that information they get from scientists is accurate and reliable. Fifty-one percent said they trust that information only a little, and another 6 percent said they don’t trust it at all.”

People trust science journalists even less, with only “12 percent of respondents said (saying) that they had a lot of trust in journalists to get the facts right in their stories about scientific studies.”

I was raised by an engineer with a science background.  I don’t have any religious beliefs that keep me from believing what scientists say about human or earth history.  My political and ideological beliefs don’t conflict with those of scientists, generally.  I believe that science is the best method of seeking the truth that humans have found thus far.  I believe in the efficacy of the scientific method.

But I am one of the people in the 51 percent who only trust the information provided by scientists “a little” and one of the 88 percent who doesn’t trust science journalists to get the facts right. I haven’t fully lost my faith that scientists will eventually get to the right answers, but I have lost my trust that they are on the right path. Here are a few reasons why:

  1. I know more about my mysterious condition than they do.  I had an adverse reaction to Cipro, a fluoroquinolone antibiotic, and that triggered Fluoroquinolone Toxicity Syndrome – a syndrome that is more similar to an autoimmune disease than an allergic reaction to a drug.  There are hundreds of reputable, peer-reviewed journal articles about the effects of fluoroquinolones on human cells.  I am thankful for those articles (and the scientists that did the research and wrote the articles), as they have given me much of the information that I have.  But there is no consensus among research scientists about how fluoroquinolones affect humans, or even human cells.  Fluoroquinolones are chemical creations of humans.  Their effects on human cells should be testable, verifiable and known (they have been on the market for more than 30 years), but they’re not. The effects of fluoroquinolones on human cells are complex and multifaceted. But there are causes and effects and truths to be found, yet victims of these drugs are left to do the research about how these drugs work and put together the pieces as to why they are ill, because the experts, the scientists and researchers, aren’t. This isn’t okay.
  2. Rise in chronic mysterious illness.  People are sick with “diseases of modernity.”  Doctors and scientists don’t seem to have any answers as to what diseases like fibromyalgia, chronic fatigue syndrome, adverse reactions to drugs (including vaccines), autoimmune diseases, allergies, and others are caused by, or how to fix them. When you, or a family member, become ill, and there is nothing that your doctor can do to help you, yet your pain and suffering are definitely real; the natural and reasonable tendency is to lose trust in those who are failing to give you answers. We expect answers to medical, biological, and chemical problems from doctors and scientists, and when they fail to give us those answers, we lose faith in them.
  3. Publication bias.  Publication bias is “the practice of selectively publishing (drug) trial results that serve an agenda.” It’s an ethically disgusting practice and most scientists agree that it should be eliminated, somehow. Yet it continues. The Huffington Post article noted that many people distrusted scientists and science journalists because they believed that the scientist’s findings were influenced by political ideology or the influence of the companies sponsoring them. No system has yet been put into place to minimize or eliminate bias.
  4. Scientists aren’t seeing the big picture.  There is a struggle between specialization and detail, and the so-called “big picture.”  Journal articles will point out details of a problem, then fail to link those details to the big picture.  For example, there are journal articles that note that fluoroquinolones deplete mitochondrial DNA.  What that means for human health and how that affects the person who takes those drugs, is not noted.
  5. Scientists aren’t taking a stand.  There are journal articles about the disastrous effects of some drugs on human health, but there seems to be little screaming about the limiting of the use of those drugs based on the findings. Rather, the warning label is simply updated, and people continue to be hurt, when their pain, suffering and death could have been prevented.
  6. Nonsense explanations.  In an article in The Atlantic entitled “Living Sick and Dying Young in Rich America” about how an increasing number of young people are coming down with chronic illnesses, especially autoimmune diseases, the explanations put forth by the doctors and scientists interviewed as to why young people are sick with autoimmune diseases bordered on ridiculous.  Junk food and a lack of exercise were asserted to be the main culprits. Junk food and lack of exercise will certainly make a person fat and they may cause some chronic illnesses like obesity and diabetes, but they aren’t likely to trigger an over-expression or over-stimulation of immune system cells (unless the junk food is made from GMOs and immune-system altering chemicals, in which case it’s possible), which is what causes autoimmune diseases. Perhaps pharmaceuticals that have been shown to stimulate immune system cells should be looked at as a culprit, instead of the victim’s diet and exercise habits.
  7. Faith-based assertions.  Almost every journal article I read about the safety of the drugs that hurt me, fluorouquinolones, has a faith-based, incorrect statement that they are “generally regarded as safe.”  Many of the articles then go on to note deleterious effects of fluoroquinolones on human cells, but those truthful findings don’t seem to inspire revision of the presumptive statement that they are “safe.”
  8. Faith-based following.  To be accused of being anti-science is a huge insult.  If you question the safety of a drug or vaccine you risk being accused of being anti-science, and the assumption is that you must be irrational, dangerous, or opposed to the progress that has been made with other pharmaceuticals or vaccines.  The demonizing of those who question scientists is, ironically, anti-science, as science is built on questioning assumptions and faith-based beliefs.
  9. Conflicting results.  When questions are asked that should have a yes or no answer, and those questions can be verified in a laboratory setting, different groups of scientists should be able to get consistent results.  Replicability is a tenet of science. Yet there are conflicting results to many important, answerable questions throughout scientific journals.  It’s frustrating and it decreases the credibility of scientists that questions that should be answerable aren’t being answered.
  10. Changing stories.  Is butter good for us or bad for us?  How about coffee?  How about fluoride?  What about statins?  The story changes constantly. This destroys the credibility of the people telling the story – doctors, scientists, nutritionists, and others.
  11. Disbelief of patient reports.  If one patient comes forward asserting that a pharmaceutical or vaccine hurt him in an unusual way, it is reasonable to think that the patient might be mistaken, that there might be another explanation for his pain.  However, if hundreds or thousands of patients come forward with the same, or similar stories, their assertions should be listened to. Unfortunately, their stories are being systematically disregarded and denied by doctors and scientists alike. Hurt patients have no reason to lie, they have no conflicts of interest (generally), so they should be listened to and believed. In systematically ignoring them and their pain, doctors and scientists are being callous and un-curious, and they are losing credibility.
  12. Not asking the right questions.  Mitochondrial dysfunction is related to many diseases including, “schizophrenia, bipolar disease, dementia, Alzheimer’s disease, epilepsy, migraine headaches, strokes, neuropathic pain, Parkinson’s disease, ataxia, transient ischemic attack, cardiomyopathy, coronary artery disease, chronic fatigue syndrome, fibromyalgia, retinitis pigmentosa, diabetes, hepatitis C, and primary biliary cirrhosis” (source) and others.  Many pharmaceuticals, including statin drugs, synthetic antibiotics, antidepressants and others, adversely affect mitochondria.  Yet the affects of drugs on mitochondria are not systematically examined before drugs are put onto the market.  If mitochondria are not being looked at, the right questions are not being asked, and if they’re not asked, they won’t be answered.  We count on scientists to ask the right questions.  When they don’t, they lose credibility.

The list above saddens me.  If I can’t trust scientists to give me answers, who can I trust?  Is there an alternative?  I’m not the type to start an alternate belief system, and I truly do believe that the scientific method is the best way of finding truth that we have.  But scientists are failing to find the answers as to why, for example, an increasing number of young people are suffering from chronic autoimmune ailments than at earlier times, or appalling autism rates keep getting worse and worse, and people are suffering because of the lack of answers provided.  So I have lost trust in them.  Sadly, I have more trust in personal reports (which are, of course, anecdotal) that I read on the internet than I do in scientific studies.  At least I know that the people screaming about their pain, their struggles, their need for answers, etc. aren’t subject to publication bias with their screams.

The only way to find answers to chemical, biological and medical problems is through science.  Scientists must be the ones to step up to do the science. They must be the people to find the answers.  Substantive, reliable, replicable, truthful information cannot be gained without them and their methods.  We are at their mercy in finding answers to many of life’s problems, especially those having to do with human health.  I trust that some brave scientists will step up to rectify some of the criticisms that I listed above.  I certainly hope so.

I don’t expect scientists to be perfect.  I don’t expect them to have all the answers.  I don’t expect them to be infallible.  But I do expect them to be curious, humble, truth-seekers who minimize bias and conflicts of interest to the best of their abilities. I expect them to be ethical and moral. I expect them to take responsibility for the bad that comes along with the good of their creations. I expect them to be prudent and careful when dealing with chemicals that can mess things (human bodies and the environment) up in ways that can’t be fixed.  I expect them to be honest.  I expect them to be outraged.  I expect them to be curious.  I expect them to seek answers to the real problems and dilemmas that people face.  Perhaps I’m naïve.  Perhaps I’m expecting too much from my fellow humans who happen to have the title of Scientist.  Perhaps I’m not being fair.  I apologize if that is the case.  We are all just people trying to do the best we can to make the world a better place.  I just wish that I was still sure that, collectively, scientists were making progress toward making the world a better, not worse, place.  Until I gain some reassurance, consider me one of the doubtful and untrusting.  I am truly, deeply saddened by this.

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.

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with the fluoroquinolone antibiotics, Cipro, Levaquin, Avelox and others: The Fluoroquinolone Antibiotics Side Effects Study. The study is anonymous, takes 20-30 minutes to complete and is open to anyone who has used a fluoroquinolone antibiotic. Please complete the study and help us understand the scope of fluoroquinolone reactions.

Hormones MatterTM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones MatterTM is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. For more information contact us at: info@hormonesmatter.com.

To support Hormones Matter and our research projects – Crowdfund Us.

Medication Safety and Efficacy Studies: Share Your Experience

2298 views

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.

A Fragmented Balance: Life Post Cipro

3890 views

It has been seventeen months since I took three doses of Cipro and seventeen months of endless education of a degree in which I will never receive nor have ever been interested in to begin with. Pushed into an unfamiliar world due to a prescription of an antibiotic for an infection I did not even have.

I have never been one to like medications and because I have always been generally healthy, I have rarely ever needed them. A suspected urinary tract infection is what started this whole mess.  As it turned out, it was bladder irritation due to ice tea, not an infection. If I had listened to my gut I would not have swallowed the poison. Instead, I listened to my doctor. Why? Because I had been going to her for quite a long time, she knew me best; she is supposed to have my best interest at heart. In fact, she knew me so well that when she gave me the prescription she told me NOT to look at the side effects because I would choose not to take it. She knew I hated taking medication. It was JUST an antibiotic. That’s what she said and that is what I told myself.

Well Cipro is NOT just an antibiotic for some people. For some people it is poison; it is a game of Russian roulette with all chambers full.  I will spare you the details of the thirty plus symptoms it has caused and continues to cause, but know that my life has not been the same since and it never will be.  Even if my body recovers, it will never be the same. It can never give me the time back that I have not been able to spend with my children because I was laying in bed icing my hamstrings, or the hikes I have had to avoid because of the muscle loss; the time I have spent researching alternative ways to heal because the medical community has NO clue. Life will be different, from here on out.

I failed to mention the worst side effect of Cipro toxicity – how all of this can consume you, swallow you whole and spit you out in pieces. Fragments. Trying to fix yourself while being sick is not an easy task. It is an unfair task actually. It can make you angry; it can make your friends and your family angry. They don’t want to hear it and you are too tired to listen to yourself anymore.

I became silent.

During my silence an evolution occurred. It has started me on a new journey; a delicate balance of before, after, and mostly today. The object of my new journey is to gather the fragments each day as if they are new and polish them, repaint them and do my best to put them back together again. The object is to make a new art piece, a new me, post Cipro injury and to hope that people will admire the new me, but more importantly, that I will admire the new me, the stronger me, the less naive me. I think will call my art piece “Fragmented Balance”.

Participate in Research

Hormones Matter is conducting research on the side effects and adverse events associated with the fluoroquinolone antibiotics, Cipro, Levaquin, Avelox and others: The Fluoroquinolone Antibiotics Side Effects Study. The study is anonymous, takes 20-30 minutes to complete and is open to anyone who has used a fluoroquinolone antibiotic. Please complete the study and help us understand the scope of fluoroquinolone reactions.

Hormones MatterTM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones MatterTM is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. For more information contact us at: info@hormonesmatter.com.

To support Hormones Matter and our research projects – Crowdfund Us.

How Hair Loss Changed My Life

13697 views

It’s funny to think I have to be thankful for a pill that made my hair fall out. My doctor had just prescribed the latest and greatest birth control pill, a magical pill that allowed you to have a period only four times a year.

But what my doctor didn’t bother to find out was that having a period four times a year was something I was used to. It was something I often felt strange about as a young girl, when all of my friends had their menstrual cycles working like clockwork.

About two months into the magical birth control pill, my hair began to fall out. Not a little bit, but in chunks. I was horrified and called my doctor straight away. Her advice? To go on taking the pill because it probably had to do with “something else.” She asked, “are you stressed at work?”

Desperate for answers, I took to the Internet to see what other women were saying. I was shocked when I came across a forum of women talking about their hair loss and Seasonique. One woman said she had been off the pill for years and her hair continued to fall out.

I ignored my doctor’s suggestion and threw the pill in the trash. The next day, I made an appointment with my dermatologist to see what I could do about my hair. A chunk of hair had fallen out in the front and it was embarrassing and scary.

The Dermatologist Diagnosed My Hormone Imbalance

My dermatologist did what my gynecologist should have done: she ran a battery of blood tests right away. Within a day, she called with some news. “We believe the hair loss is caused by alopecia areata,” she said. “It can be brought on by stress but is a hereditary disease.” She prescribed me steroid injections to stimulate the hair growth but then she added something else:

“You also have elevated DHEA levels,” she said. “This is not something to be too concerned about, but I suggest you speak to an endocrinologist or reproductive specialist.”

DHEA? What was that? I thought. But before I could ask, she was gone.

So commenced the journey of being my own doctor, my own counselor, my own pharmacist, and my own biochemist.

Unfortunately, in this world of busy doctors and poor bedside manner, you sometimes have to take the research upon yourself. Leave no stone unturned. Ask questions. Be annoying. It’s your health and you must fight for it.

Here is what I found out: DHEA, or dehydroepiandrosterone, is an important steroid hormone produced by the adrenal glands. It works as a precursor to both male and female sex hormones and therefore helps regulate over 55 hormones in the human body. Healthy DHEA levels are important to maintaining hormone balance in the body.

Still confused by the meaning of this, I called a reproductive health specialist at a clinic for fertility. I was lucky at the time to have excellent insurance, something I know a lot of women do not.

As soon as I talked to the doctors, who would later end up performing endometriosis surgery on me, I was instantly impressed by their care, efficiency, and expertise.

PCOS and Endometriosis

They quickly diagnosed me with PCOS, or polycystic ovarian syndrome. This, they said, was the reason for my increased DHEA, hair loss, and weight gain. Next, they took a detailed history from me. Through this they discovered what they expected to be endometriosis. They recommended laparoscopic surgery to clear out the endometriosis.

This was all so much information for me, and I took a few days to try to process it. My new doctor, an expert surgeon, said something that intrigued me:

“We are seeing an increase of women who have dual diagnosis: PCOS and endometriosis.”

More women with conditions just like me? Why would this be?

My research began with trying to make sense of the two diseases. I underwent surgery for endometriosis in 2011 and then focused on working with my doctor to change eating habits that exacerbate symptoms of PCOS.

But that link still bothered me.

Why would there be more women with the two illnesses? And what was this increased DHEA doing to my health? And what could be causing this increase? Unfortunately, these questions still linger, with many doctors avoiding my questions.

When my treatment for endometriosis was over (they found adhesions on my bladder, uterus, and small intestines), I was left to pick up the pieces of my scarred body. I ignored my doctor’s advice and went off the birth control pill, something I has been taking for 10 years, and commenced on a journey of self discovery and holistic health.

I’d like to share them in the hopes of helping other women who might be struggling with the same afflictions:

Get a Second (and Third) Opinion

A huge lesson I have learned is that if you think something is wrong with your body, you are probably right. Get a second opinion, get a third opinion, call people day and night if you have to, but don’t take this lying down. Ask questions and make sure your voice is heard when it comes to your health. At the end of the day, if your primary doctor is not helping, seek help elsewhere.

Enjoy the Fruits of Nature

Things that are made in a factory and placed in a can or a box are not healthy for anyone, but particularly for people struggling with hormone imbalance. Xenoestrogens, or estrogen mimicking hormones, can be found in a number of food additives and preservatives. Animals in the United States are raised with doses of antibiotics, steroids and growth hormones. Whatever the animals are eating, you are eating, and it continues the toxic cycle. My suggestion is to turn to a vegetarian, whole foods, organic diet, and keep away from the frozen, boxed, or canned meals. If you want to keep eating meat, just make sure it is organic.

Treat the Whole Self

Undergoing a major procedure or surgery is not just jarring for the body, it is jarring for the mind. A part of you has died and you have to allow yourself time to mourn it. One of the best things I ever did was to explore reiki and other forms of spiritual healing. Whether you choose to do yoga, journaling, hiking, dancing, reiki, acupuncture, or just take yourself on a vacation, make sure you treat the whole self. The body can repair itself in time, but the mind takes much longer. Allow yourself that time. Love yourself as a way to repair.

Work Up a Sweat

The worst thing you can do for hormone imbalance is sit around all day and feel sorry for yourself (those are my mother’s words). In our daily 9 to 5 lives, stuck behind a computer, sitting in our cars stuck in traffic, it’s hard to find time to exercise. But that’s why you have to make the time. Whether you sign up for a gym, start swimming, do yoga, or just walk around your neighborhood, moving your body will help your hormones wake up. Try to get at least 1.5 to 3 hours of cardio a week and you will begin to notice the difference in your physical and mental state.

Get Off the Pills

I am no advocating you run off and get pregnant, but I will say that getting off birth control was a decision I stand by to this day. You have to allow your body to show you how its working without the hormones and then make a decision about your treatment. Nowadays, birth control is prescribed so quickly to young girls, when there is very little research done about their medical history. Meanwhile, women are on birth control for 10, 15, 20 years without doctor’s mentioning that this might not be in their best interest. If you can, try to get off birth control, at least for a while, to see how your hormones are working on their own.

Two years later and my hair has fully grown back. Looking back at that time, I would not have changed a thing. And oddly enough, I am glad that my hair fell out, because it woke me up to something that was going on inside of me that might have lay dormant for years. If I were a doctor, I would research quite ferociously the link between PCOS, endometriosis, and DHEA. I would be curious as to why there is a link between PCOS and endometriosis and particularly, why now? Is it because we could not accurately diagnose the two disorders in the past? Or is it because people are eating differently now? Or perhaps because more women are on birth control pills now than in the 1950’s?

These questions are lingering, but one thing remains: you can overcome your symptoms of hormone imbalance, you can overcome your hair falling out, you can overcome surgeries that  cut you deep inside, and you can rise to become better and stronger than you ever were before.

 

Endometriosis and Adhesions: A Story of Hope

3756 views

Sometimes the holiday season causes us to feel more reflective than usual. As I was on my way home from my work holiday party, I was struck by the difference between this year’s holiday party and last year’s. Last year I spent the party surreptitiously downing painkillers and trying to look happy. I was barely recovered from the two surgeries I’d had for endometriosis a few months prior, and the complications that ensued, and I was already starting to suffer from the problems that I would eventually realize were caused by adhesions as a result of the surgeries.

This year I spent the evening enjoying the party, socializing, eating and dancing, without any pain at all. It was actually the first time I’d been able to enjoy a holiday party in several years, because somehow every year my endometriosis always seemed to spoil the fun. It still feels a bit unusual to me to be without pain—it’s like being shoved from the middle of a noisy crowd into a soundproofed room—the absence of sound/pain becomes extremely noticeable. Although I’m not completely free of pain every day, or even most days, it’s remarkable to me that it can happen at all, after many years of daily pain to some degree.

They say it takes a village to raise a child, and I think the same is true for a patient with chronic disease: it takes a team of people, health professionals and support people, to help make the patient’s disease manageable. I have been helped by so many amazing people along my journey, and I am quite sure that I would not be at the point I am at today, if not for the help of all of them together.

For me, one of the first steps in getting better was laparoscopic excision surgery, to treat my endometriosis.  In addition to being an extremely skilled surgeon, the doctor who did my excision surgery was truly an unusually dedicated and compassionate doctor. When I experienced surgical complications due to an undiagnosed bleeding disorder, he was at the hospital morning and night, and calling me to check in several times per day. After a fainting incident late one night, he was at the hospital 20 minutes later, at 11 pm. When a technician couldn’t take my blood within the time frame he wanted one weekend day, he came to the hospital to do it himself. He always had a reassuring smile and a hand on my shoulder, saying, “hang in there, you’ll get through this.” I’m not sure what would have happened if I’d been in the hands of someone less experienced and committed.

Although the excision surgery had provided me with a lot of relief from endometriosis pain, adhesions caused by that surgery, and a subsequent surgery to remove a hematoma caused by my bleeding disorder, began to cause as many problems, if not more, than I’d had before the surgeries. I had severe pain in my left lower pelvic area, severe pain and nausea after eating, left chest and rib pain, and eventually severe bladder pain. Simple, basic activities like walking and eating were too painful, and I was in the ER multiple times because of pain and gastrointestinal problems.

The problems with adhesions led me to seek treatment with a physical therapist who also ended up exceeding my expectations for her level of skill, commitment and caring.  After being told by my doctors that the only treatment they could offer for my adhesions was more surgery, which might actually make the problems worse, I traveled to Miami for a specialized form of manual physical therapy that treats adhesions non-surgically (Clear Passage physical therapy). This treatment was very successful and reduced all my pain tremendously, restored my ability to eat, and reduced my constant nausea to merely occasional. I was very lucky that my physical therapist was extremely compassionate and sensitive, and through many hours of conversation during treatment she helped me make sense of the emotional consequences of so many years of pain. She also provided an invaluable self-treatment program that I continue to do at home to help maintain the benefits of treatment, and continues to be an ongoing long-distance resource when I have questions or problems.

Finally, the support of family and friends, coworkers, and online and in-person support groups is also invaluable to me as I continue to navigate through the journey of chronic illness. Everyone with chronic illness has felt those moments where they feel isolated and lose hope that things will get better. In those moments a shoulder to cry on, or a message that we are strong and can move forward despite obstacles, or even an offer to keep the faith for us when we can’t, are what keep us afloat.

My reflection on holiday parties past and present helped me realize how fortunate I have been to have a team of skilled and compassionate healthcare professionals, and caring support people, to help me through this difficult journey. To anyone reading this who also suffers from a chronic disease, I wish you the best in assembling your own team, and many happy holiday parties for the future.

 

The Doctor Said Not to Worry About Levaquin Warnings

7813 views

I was floxed on October 8 of 2012. I was given Levaquin while on high dose of prednisone as a prophylactic measure during an asthma flare. I had been on a 10 day course of 60mg/day prednisone, was off a week, and then had to go back on for an asthma flare. The asthma doctor gave me Levaquin as a “prophylactic measure” because she was afraid I would pick up some kind of infection at work. I had no infection at the time.

When I filled the prescription, the pharmacist warned me about the tendon issues with Levaquin, especially since I was over 60, and on prednisone. He said I should drink plenty of water and I should be fine. The scrip came with a 7-page patient medication guide. On the first page was “What is the most important thing I need to know about Levaquin?”  It included the warning about tendon issues.

I called the doctor back and said I didn’t think I should take the drug.

She said they use it this way all the time and no one ever really has a problem. So I took the first pill and went to bed.

My Levaquin Reaction

I woke up 4 hours after taking the first pill, with tremors, ringing in my ears that sounded like I was in a tent full of cicadas, and audial hallucinations that sounded like the soundtrack to Rosemary/s Baby (the evil Roman chanting). I was also seeing things out of the corner of my eyes. I called the doctor the next day to report the symptoms.

She said, “Oh it can’t be the Levaquin, it must be the prednisone. It can make you jumpy.”

I replied that I have been taking prednisone all my life, and never had anything like this. I took the second pill that night, anyway.

The side effects got worse and I finally read all 7 pages of the patient guide. I realized that I was suffering the CNS and peripheral neuropathy issues, and decided I would quit the Levaquin. I called the doctor the next morning and she wanted to give me another antibiotic.

I said “but I don’t actually have an infection, right?”

She said, “yes.”

I said no more antibiotics.

The Next Few Weeks Post Levaquin Toxicity

The audial and visual hallucinations went away after two days, but the tinnitus and the tremors remain to this day.

Eight days later I left for a long-planned trip to Florida for wildlife photography. I woke up in the middle of the night in a hotel room 1100 miles from home with my whole body on fire, pain in my neck, shoulders, elbows, wrists, hips, knees and ankles feeling like they had hot pokers sticking through. I had burning electrical sensations in my hands and feet, a ring of electricity running around the top of my head. I could barely walk. My thighs felt like I had tried to run a marathon with no warm up and that they were going to collapse under me at any moment. Prior to this, I was used to hiking all day carrying 25 lbs of photo equipment through forests, swamps, etc.

Post Levaquin Insomnia and Sleepwalking

I won’t even try to describe the next 10 days in Florida before I could get home, but needless to say I did not do a lot of wildlife photography that trip. I also developed insomnia. I could not sleep more than 1-2 hours at a time, and I would have very vivid dreams. I found myself sleepwalking, and having nightmares, which continued when I returned home. I would find myself in the kitchen making coffee at 1:30 AM because the dream that the alarm had gone off was so vivid. One night, I woke up on my deck in my underwear and barefoot at 2 AM in below zero weather (with snow on the deck) smoking a cigarette, because I was dreaming I was back in Florida at the non-smoking condo. The side effects of fluoroquinolone antibiotics are worse than the symptoms of the illnesses for which they are prescribed. This is not appropriate.

In the year since my reaction, I have been through neurologists, rheumatologists, physical therapy, and psych/neuro testing for the loss of memory and brain function. I have been diagnosed with essential tremor and fibromyalgia and osteoarthritis, with brain fog, reduced cognitive functioning, insomnia, high blood pressure, to name a few. I also have ongoing stomach issues. Here too, the medications that have been prescribed for the adverse effects of Levaquin – the antidepressants, anti-seizure medications, benzodiazepines and pain killers – have side effects far worse than what I experienced post Levaquin reaction and do nothing to heal my body. They only mask my symptoms and don’t even mask them that well.

Going Forward Post Levaquin Toxicity

I use turmeric extract 3 times a day for pain management. The pain never goes away totally, but the turmeric keeps it down to a dull roar. The hot poker sensation that I once felt, is now less frequent. I always have pain though. The sensation of imminent collapse in my thighs never goes away, even though I am  back to  walking 3 miles a day. The tremors have actually progressed. The tremors and the brain fog (memory loss, loss of words, losing track of what I am doing, loss of ability to multi-task ) have kept me unable to work since May of 2013.  And, I still can’t sleep more than 2 hours at a time or with sleep aids 3-4 hours. Here, in December of 2013, I am still disabled. My GP is also certified in Functional Medicine, and we are working with a course of supplementation based on blood tests for oxidative stress and dietary changes. We are following Dr. David Perlmutter’s Grain Brain Diet to improve neurological issues. We are both researching all of the possibilities we can, and hoping each day for some kind of breakthrough for this incredible illness.

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with the fluoroquinolone antibiotics, Cipro, Levaquin, Avelox and others: The Fluoroquinolone Antibiotics Side Effects Study. The study is anonymous, takes 20-30 minutes to complete and is open to anyone who has used a fluoroquinolone antibiotic. Please complete the study and help us understand the scope of fluoroquinolone reactions.

Hormones MatterTM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones MatterTM is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. For more information contact us at: info@hormonesmatter.com.

To support Hormones Matter and our research projects – Crowdfund Us.

More Ideas on Gardasil Toxicity and the Thiamine Connection

6840 views

I am in constant touch with the mother of the Gardasil treated daughter whose personal research suggested that her daughter had beriberi after she received the HPV vaccine.  As has been previously posted on this web site, thiamine deficiency, the basic cause of beriberi, was proved in this girl by a blood test called transketolase. It led to the test being done on two other girls and a boy, all of whom had been Gardasil vaccinated. All proved to have thiamine deficiency through this test.  Each of these young people, who have had the HPV vaccination and have succumbed to prolonged illness, have a variety of symptoms that have defied diagnosis and treatment.

As the original post on this subject pointed out, Postural Orthostatic Hypotension Syndrome (POTS), an apparently common post Gardasil illness, is a form of dysautonomia [damage to the autonomic nervous system] as is beriberi in its early stages. More recently, cerebellar ataxia has also been reported as a post Gardasil phenomenon. I have already pointed out on a previous post that the first case of thiamine dependency to be reported was in a six year old boy who suffered repeated attacks of cerebellar ataxia (see below for reference). Thus, thiamine plays a vital part in the brain.

As an analogy, the effect of its deficiency can roughly be compared with a defective spark plug in the engine of a car, thus killing the engine. It has been difficult for a number of Gardasil affected families to accept this proven fact because it seems so simple. It is not at all simple, for thiamine deficiency is a very serious problem in the brain. Believe it or not, it is capable of explaining all the symptoms that have been described to me.

The mother, whose research had led to the belief that beriberi was the cause of her daughter’s illness, has notified me of a number of symptoms that have been the subject of many questions from other mothers of Gardasil affected individuals. For example, one of the most classical signs of beriberi is swelling of tissues from fluid under the skin. This is called edema, a phenomenon that occurs in what is generally known as “wet” beriberi.  In dealing with a complex subject where technical knowledge is required, it was one of the observations in her daughter that convinced the mother that this was in fact beriberi.

Puzzling Symptoms Post HPV Vaccine

One of the puzzles that the mothers have discussed is that the vaccination seems to pick off the brightest and the best students who are usually also excellent athletes.  Another puzzle they have discussed is that symptoms seem to get worse when there is an abrupt change in the weather. Severe reactions to food and histamine related skin problems seem to be common to many of these affected individuals. Naturally, these have been passed on to me to try to provide an explanation, based on the proof that has been shown by the transketolase test.

Oxidative Metabolism 

We all understand that our lives depend upon the consumption of oxygen.  The brain uses 20% of the oxygen that you intake with every breath. This is because the metabolism in nervous tissue and the brain is very rapid. The same is true for the heart and that is why beriberi predominantly affects the nervous system, the brain and the heart. Thiamine “ignites” (spark plug) the fuel (glucose) by causing the glucose to combine with oxygen (combustion). This is what is called oxidative metabolism and why I refer to thiamine as “the spark of life”.  It is how we generate energy in every one of our 70 to 100 trillion cells that enable them to function.

Thiamine and the Brain

The lower part of the brain is highly sensitive to thiamine deficiency, interrupting the normal course of oxidative metabolism. If this part of the brain (the computer) is made to be inefficient from mild to moderate thiamine deficiency, it becomes irritable. If the deficiency persists or is more severe, structural damage begins and is irreversible. When the brain is healthy, all the physical and mental stimuli that we encounter on a daily basis are passed into the computer through our senses.

With the aid of the “thinking brain”, a decision is made as to how we will respond to the input stimulus, including our emotional responses which are generated in the limbic system and modified by the upper “thinking brain”. This is how we continuously adapt to both the mental and physical “stress factors” that we encounter in our daily lives.  But if the computer is made irritable, it will over-react to a stimulus and create an exaggerated response. For example, a normal response to an insult would be anger.

An exaggerated response might be associated with violence because the thinking brain has not suppressed or modified the reflex.  It is the limbic system (computer) that generates the fight-or-flight reflex. When it is made to be irritable this reflex may be initiated without there being a reason for it. It is then called a panic attack. Or, with a trivial stimulus, it might send a signal to the cells which release histamine, the reaction being initiated by something as simple as perception of a quick change in the weather.

Like a high powered car that requires more energy, so a high IQ is more demanding of oxidative metabolism, thus perhaps explaining why superior students are at greater risk. When we put food into the stomach, it automatically sends a signal into the computer. As we fill the stomach, these signals gradually crescendo, finally telling us that we have had enough to eat.  If, however, the computer has been made to be more sensitive, a severe reaction to the food may be generated and we call it food allergy. We can begin to see that the action is in the brain, not in the stomach.

How Could Gardasil Induce Thiamine Deficiency?

The primary answer to this difficult question is – we don’t know.  For example, we do not know whether a person has an abnormal transketolase before the vaccine is given.  We know that thiamine metabolism is related to the intake of sugar in the diet.  Beriberi has been reported in Japanese students ingesting carbonated beverages, a common worldwide activity associated with social groups, particularly adolescents. We know also that our present food supply does not contain the kind of concentration of vitamins and minerals required for perfect health, again suggesting the greater risk of a high IQ in relation to the quality of diet. The only direct connection between thiamine deficiency and the action of the Gardasil vaccine is that it is a yeast based vaccine. The yeast used in its preparation contains an enzyme called thiaminase. This naturally occurring enzyme breaks thiamine into its component parts and destroys its biologic action. Thiaminase disease has been reported in Japan.

Could Any Vaccine or Medication be a Stress Factor Sufficient to Induce Thiamine Deficiency?

In a previous post I told the story of how workers in factories succumbed to their first symptoms of beriberi as a result of their exposure to sunlight. What this implies is that you can have a marginal thiamine deficiency which is asymptomatic. Some kind of stress factor such as a simple viral illness, an injury, or even an inoculation can initiate symptoms. There are many examples of this in the medical literature, where a marginal metabolic situation that affects the brain is activated in this manner. Evidence provided by an abnormal transketolase is but a beginning, providing a scientific clue that should, in a sane world, initiate further research.

Additional Reference

Lonsdale D, Faulkner W R, Price J W, and Smeby R R. Intermittent cerebellar ataxia associated with hyperpyruvic acidemia, hyperalaninemia, and hyperalaninuria. Pediatrics 1969;43:1025-34.

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine (we hope to launch the male version soon), please take this important survey. The Gardasil Cervarix HPV Vaccine Survey.

To take one of our other surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news and research participation opportunities click here.

To share your health story with our community, click here.

If you think what we do at Hormones Matter is worthwhile, contribute to our research programs and our continued health research reporting. Hormones Matter is totally unfunded and can use your help to continue operations. Crowdfund Hormones Matter – Buy an Unsubscription.