Medical Political Correctness Gone Wild

Happy Birthday to my sweet daughter!  You, my dear, are alive and well, after a h*ll that no one should ever have to go through.  It was because of you that I had the courage to start this blog adventure of mine.  It was because of your encouragement and belief in me that convinced me that perhaps I did have something to contribute to the world after all.  It was your courage that said, "Heck, yeah, you can write about me, I trust you!" that spurred me to write about the good, as well as the bad, in what is going on in medicine today.  You have been my encouragement since a tender age, even when I would say, "I'm the mom, not you!"  I forgot that I had written you a special letter when you started college, but you showed it to me one day years later when I was really upset with you about some trivial mother/daughter "thing."  I was shocked that you always carried it around in your wallet.  You told me that it had, indeed, gotten you through a lot of bad days.  The corny line that got you through the most however?  I'd written that "you are the wind beneath my wings." (Good grief!  How corny can a mom get?  Evidently, very!)

And so this post is dedicated to you because no one should ever be treated the way you were when you became so ill so suddenly.  And I am ever so proud that you were able to make it through what the rest of our family is still horrified about.  In your honor I started this blog and in your honor I want to write about that which unites us both on yet another plain: that of both of us having to survive some pretty horrid hospital experiences, ones which are just wrong and should make us stop, think for a moment and wonder, "is this what we want happening in our country?"

And so here we go...

Every doctor practicing today had to take quite a few science courses in college in order to get into medical school. This is a given.  Right?   Right.  Then why is it that many doctors are making decisions not based on the scientific method but rather based on whatever is politically correct at the time?  

As we all know, the scientific method is simple - but also effective - in establishing correct theories about science in general and medicine in particular.  First, one states a hypothesis and then observes what happens in the real world.  If the hypothesis explains the observations, it is a good hypothesis and stands until it cannot explain future observations, in which case, a better hypothesis is made. 

What is never done in good science is to ignore the facts in favor of keeping a belief or theory.  No matter how much you believe in a particular hypothesis, if the facts don't agree with it, you have to junk the hypothesis and get a better one.  Believing in a theory and ignoring the facts is worse than throwing out the baby with the bathwater.  It is throwing out the baby and keeping the bath water.
  
So what does this have to do with anything? 

Over the past few years I have personally witnessed political correctness trump good medicine and have read about health plans pushing treatments for various medical conditions, this despite good medical literature showing that these treatments don't work. (Note: in medical lingo, "good" means what we in the real world think of as "excellent.")  Here are some examples:

1. It is known that cognitive behavioral therapy (CBT) does not work for many patients with CFIDS/ME/CFS, particularly for pain and fatigue.  However, from what I read it is the preferred treatment by many third-party payers, probably because it is relatively inexpensive as opposed to, let's just say, Ampligen (poor, poor Ampligen which people have been trying to get through since the 1970's!) which HAS helped certain subgroups of CFIDS patients.  Furthermore, I personally think that it's a cop-out for doctors who have NO idea what to do with those severely affected by CFIDS.  And I do mean "cop out."  For shame.

2.  Similar to CBT in its ineffectiveness in helping CFIDS/ME/CFS patients is graded exercise.  However, graded exercise can actually make CFIDS symptoms worse since many CFIDS patients cannot tolerate exercise and their fatigue and decreased stamina worsen after attempting a graded exercise program.  Yet graded exercise continues to be touted as a legitimate treatment for CFIDS and is preferred by third-party payers. (Again, no better ideas, but let's give patients "something," even if it hurts them: let THEM be the failures and not "us.")

3. Aerobic exercise has been shown in some studies to help fibromyalgia patients.  However, one must understand that any fibro patient capable of exercising on such a level probably does not have severe fibro. When a patient with severe fibro, who may often have serious co-morbidities, such as growth hormone deficiency or DHEA deficiency, tries to do aerobic exercise and fails because of very low stamina that patient often feels like a failure and, to make matters worse, may be called "noncompliant" by the physical therapist or the doctor.  My rheumy told me that one of the first things he learned in medical school is not to blame the patient, but that is exactly what happens in this situation.

4. To make matter worse, too many medical practitioners often ignore the medical literature and when studies are brought up for discussion they often get defensive or are completely wrong...

• When my daughter was extremely ill and dying, in addition to everything else going on, she started having severe myoclonic jerks right after her emergency life-saving surgery.  I asked her consulting neurologist, a full-blown attending at a "major medical center," one of the very best in the US, about her being prescribed Klonopin (clonazepam) to treat the jerking.  To my surprise and horror I was told that Klonopin CAUSED jerking, which is an absolutely false statement.  Given that I was still new at this "game" of digestive illnesses, the fact that I was still reeling from almost losing my daughter, and that I thought that surely I had my information wrong, I didn't question the doctor at the time but filed it away immediately.  Guess what: he was indeed wrong!   Klonopin is useful in seizures and in preventing myoclonic jerks.  I should have said something: after all, I've been taking Klonopin for nearly 20 years, yet I allowed this bozo to bully me.  Obviously, THAT wouldn't happen again.  In fact, it didn't happen again for the next five or six hospitalizations, which followed and I heard awful information, such as....
• My daughter had had issues with her liver for many years -not from drinking, I assure you, as some doctors had insisted on believing before reading her history in the chart.  One day at the "major medical center," a doctor asked my daughter why she hadn't taken Tylenol for her pain.  Was he insane?  She needed REAL painkillers! Furthermore, if the huge amount of painkillers she was already on weren't taking care of much of the pain, what the heck was simple little Tylenol going to do?   But what was worse: I looked at him dumbfounded and finally said, "is  it wise for her to take Tylenol, given her history with her liver?"  He looked at me and said, "Oh those studies of liver and Tylenol have all been over-inflated.  We don't find it to ever be a problem."  Was HE on drugs?  (And I don't mean the legal kinds either!)
• The medical literature is very clear about the protective effects of cigarette smoking when it comes to Ulcerative Colitis (UC).  Our local gastroenterologist had no problem discussing this fact with my daughter, my husband, and me but since the she was getting progressively worse by the hour, her GI insisted that it was time for her to be sent by ambulance in the middle of the night to a major medical center for a definite diagnosis and for treatment.  He, our local guy, who had trained with some of the best of the best at the "major medical center" had no problem seeing that there could be a correlation with the fact that she had stopped smoking just days before she showed her first signs of the illness, which led within a few weeks to her almost dying several times.  Her illness was a vicious, never-seen-before sudden onset hybrid of Crohns and UC but he honestly believed it was Crohn's and even said to her, "if I thought for a second that it's UC, I'd have you outside right now with a cigarette, but I really think it's Crohn's."  (Paradoxically, Crohn's is made worse by smoking, according to most, if not all, literature.)  After he had dispatched her to the "major medical center," seeing that she was SERIOUSLY ill, the various attendings would call it UC one day, Crohn's the next.  When I finally pointed out the smoking and UC correlation as perhaps a clue to what was going on, I wasn't just rebuffed.  I was looked at as if I were Satan incarnate and told I was crazy.  Really! 
• It became quite convenient that two years later, once the nicotine patch was really "big," her newest GI physician at the "major medial center" suggested that she use it.  Ah!  Smoking but not smoking, if you get my drift.  Suddenly, nicotine was considered a factor and part of the treatment. 

My point is, how can good medical care be provided when legitimate medical findings are ignored and the scientific method is cast aside because of political correctness?

Russia was ahead of the world in the beginning of the 20th century when it came to genetics.  However, because of bolshevist/communist philosophy, where ideology wanted to ignore that "brains," for example, can be hereditary, genetics was called "the whore of capitalism," was thrown out the window, the proberbial baby with the bathwater.  I was shocked to learn this when I stayed in Kiev with family friends, where both husband and wife were physicians.  They couldn't believe how much knowledge I had of medicine in general and genetics specifically.  They'd brought out a genetics book for me to see, published now that the former Soviet Union had just fallen apart.  To my horror and their delight, I knew more of the conditions shown in photographs (such as progeria, acromegaly, etc.) than they did.  Let me assure you that this was NOT because I'm smart, but because I watched a LOT of Phil Donahue.  

This is what scares me.  Because of medical political correctness, will our country suffer the same sort of fate as what happened in the Soviet Union under Stalin?  

Anyway, this is my Happy Birthday post to my sweet, smart daughter of whom I'm so proud.  (What's a birthday greeting without the mention of Stalin?  Joke!)  V: you'll always be the wind beneath my wings: corny, but true. Thank God that you got to the "major medical center" and had a fantastic surgeon.  But thank God also, that you survived - despite some really cruddy so-called physicians.  May you live for many, many decades, happy and healthy!  You bring so much joy and goodness to so many. Happy Birthday and Многая Лета!

As always, I hope everyone's feeling their best, only better.  Ciao and paka! 


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Salt...The Rest of the Story

"These are just some of the reasons salt is not always bad for you!"  Just kidding: I have NO idea what I was being so passionate about.

 
It seems that everywhere you turn these days, the health message is that everyone MUST cut down their sodium intake. I, personally, get very offended by this message and call it "politically-correct medicine," an extremely dangerous way to go, not to mention rigid, as well as tunnel-visioned.

Instead, the message should be, know your blood pressure numbers and THEN decide, with your doctor, if you need to cut down on your sodium.

Fifteen years ago, I was at a very dangerous point in my health. Until just recently, it was the absolutely worst period of my health and out of desperation I decided to add the holistic, alternative, homeopathic and every other word you can imagine that describes what "main-stream" medicine is not, to what my doctors and I were already doing.

In the course of that year, 1997, I also went into seriously monitoring absolutely everything I ate, trying many different sorts of diets in order to find what worked best for me. I couldn't care less if a certain diet helped someone else. If it didn't work for me, it wasn't a useful diet for me, something I believed even before I became ill in 1975. If it didn't help me, it wasn't my answer, no matter how "good" it sounded. Ditto with the various therapies I underwent. No stone went unturned.

After being close to death when I started various (and many) holistic therapies - using them in addition to what worked for me in "conventional" medical care - almost miraculously, I started to get stronger - or at least I wasn't at death's door - after about two months. By six months I was actual driving again for the first time in many, many years.

But then suddenly I started to take a backward turn with passing out, frequent falls, the stars in my eyes upon getting up, the blacking out. No one could figure out what was going on. I could no longer drive for fear of a car accident.

Finally, a month later, a massage therapist, who wasn't even one of the people I went to at the holistic clinic, happened to overhear me talking to a fellow patient and heard me say that in addition to quite a few supplements, I was also taking garlic capsules every day, not realizing that one of the touted "benefits" of garlic is blood pressure reduction - fibro-brain, anyone?

Bingo! My already low pressure was made even lower by the garlic - and dangerously lower. Instead of my normal 90/70 - on a good day - my BP sank to 70/50 or even lower on bad days. The fact that I have orthostatic intolerance, each time I sat up my BP would lower by 10 points, and when I actually stood up, my BP would lower by yet another 10 points, getting my BP down to 65/50 (or even 60/45), a potentially lethal situation. Now getting out of bed was actually a danger to my life. (Note: I ran these numbers by my doctor so that there are no mistakes in writing them here - I do realize that they sound more like fiction than fact.)

A couple of weeks later I happened to mention this "discovery" to a friend of mine and she quietly told me that her father had died because of low blood pressure. I subsequently found out that low blood pressure in the past was often a cause of death. For those who remember the movie "Marty," the father of Ernest Borgnine's character also died of blood pressure that was just too low.

Now, no one thinks that someone with normal blood pressure shouldn't be concerned with sodium intake, especially if processed food is part of one's diet. However, if you eat healthy food, cooked and prepared by a person, not a company, your sodium intake will not, most likely, significantly affect your blood pressure.

However, if you have low blood pressure, you DO need to watch your sodium intake - you need to get enough salt to raise it to where you are not constantly passing out! (For some of my more spectacular falls, see a funny incident I posted before about one of my "better" falls here .)

My BP is so low that on those occasions when I throw caution to the wind and give into an Italian sub, I actually add salt to the ham! (Salt on ham? That's a good one! Joke!)  Hubby laughs that I need a salt lick. When things get very bad, I'll pour a bit of salt into the palm of my hand a few times and lick it up. And before you go "yuck," I ask you, how much does this differ from a margarita with salt around the rim of the glass, or whatever nonsense people do with tequila shots? At least there's no alcohol involved, and let's not forget that most with CFIDS/ME/fibro are alcohol intolerant.

So, let's all try to forget "politically-correct medicine," and try to figure out what our own individual bodies need. Keep an eye out for what symptoms you have and don't just blindly follow the advice of doctors on TV or on blogs who have absolutely no idea what your particular body and health needs are.

Perhaps THEN you can figure out how to attack one aspect of trying to improve your health.

I certainly intend to revisit these topics again: PC medicine, finding out what is best for YOU, as well as what your BP may be trying to tell you.

In the meantime, here's to everyone feeling the best they can, only better! Till next time - please take care!