Monday, February 22, 2016

How I Became a Medical Heretic, Part 1

A Crisis of Faith

As discussed in the previous post, "Rising Body Count Results in Supplemental Hysteria," I use supplements myself.  Having recently retired after 22 years working in medicine with specialty in oncology and post-graduate education in pharmacology, I am now a holistic wellness counselor.  My current approach to health emphasizes lifestyle, especially diet, exercise and stress reduction, with a little help from natural supplements as needed, reserving mainstream medicine for what it is really good at: emergencies such as surgical repair of major trauma.  Over the years I became disillusioned with allopathic medicine and increasingly skeptical of its safety and overall long-term efficacy in producing and maintaining "health" per se.  But, that wasn't always the case.  

In my youth I completely agreed with the sort of views being promoted today by the so-called quack-busting "skeptics" at Quackwatch, SkepDocSkeptical Raptor, and other "science-based" websites which, of course, did not exist back then.  My views changed both as a result of my own personal experiences as a patient, and my insider's perspective working in the field of medicine which I once believed in wholeheartedly.  I ultimately grew to suspect that my absolute faith in its magical healing powers may have been misplaced.  To be fair, like most laypeople my expectations of what Medicine and its High Priests, the doctors, could and could not do were somewhat unrealistic.

Since I was a small child, I've always loved science, and still do today, which is why it pains me to be called "anti-science" by the "skeptics" due to my use of supplements and holistic approach to health.  But, my view of science, as of medicine, was influenced to a very large extent by science fiction, especially the t.v. show "Star Trek," which I have watched since I was a toddler.  Dr. McCoy was one of my heroes.  I loved when he would say, "Dammit, Jim, I'm a doctor, not a __________ [fill in the blank, e.g. "bricklayer"]!" and then proceed to save human and/or alien lives using some novel therapy, like Quikrete to patch up a phaser wound on the Horta, a silicon-based life form who had been shot while trying to protect her eggs, which the miners on the planet had mistaken for convenient silicon nodules until Mr. Spock performed a Vulcan mind-meld with the Horta, revealing otherwise.

While Star Trek was fantastical, some aspects of the fictional show have crossed over into the real world today.  We don't yet have warp drive or transporters, but our cell phones now surpass the technology of the Star Trek "communicator," and audiovisual communication via Skype allows us to converse face-to-face with people from around the globe and even our astronauts at the International Space Station.  Some of the Trek medical devices have also materialized including a tricorder, among other things!  And our ability to analyze DNA, a popular method used by Star Trek doctors to identify aliens, isolate pathogens, and distinguish relatives from imposters, has advanced significantly in the last 40 years.  Still, we are nowhere near where I thought we would be by now.

The fictional exploits of Dr. McCoy aside, in my youth I had total confidence in real-world science-based medicine.  My mother was a fragile type 1 diabetic requiring numerous insulin shots daily, with frequent 911 calls for hypoglycemic crises so severe that she was temporarily paralyzed and could not speak or even swallow.  My best friend Nora's brother Charles had autism, the only person I'd ever met with that disorder until fairly recently; it was as if he was trapped inside his own mind, aware of the outside world but unable to communicate.  I was quite sure that by the time I grew up, we would have found cures for both of those diseases, along with cancer and others.  I hoped that the breakthrough would happen in time to help my poor mother, whose health grew steadily worse over the years.  Surely we would discover a drug, a chemical key to unlock the door on Charles' mental prison.  And we would find a way to reverse the pancreatic damage or even grow Mom a new pancreas!

The doctors had forbidden Mom to get pregnant but she ignored them because she desperately wanted a child.  We both survived my birth by emergency C-section at 7 months only thanks to the miracle of medical technology.  After being released from NICU, my own experiences with medicine were mostly limited to routine check-ups, as I very rarely got sick.  I enjoyed the infrequent doctor visits and didn't mind the vaccinations which, as a military brat and traveling overseas, I had the hell vaccinated out of me.  Mom had explained, "The shot will give you just a little tiny bit of the disease, so that if you ever run into that germ again, your body will remember it and be able to fight it off and you won't get sick."  I thought that was very cool!  And injections were an opportunity to demonstrate your courage.  Only sissies cried, and I was no sissy.  I was brave, and I trusted the doctors.

A fan of the t.v. shows "$6 Million Man" and "Bionic Woman," I believed that medical technology could not only repair injuries and birth defects, but would go beyond that to make us better, stronger, faster, smarter than we are.  I was a fervent believer in Better Living Through Chemistry and never questioned the safety of said chemicals, because if they were unsafe, obviously the FDA would not permit their use.  In my teen years I began studying pharmacology and was especially interested in psychopharmacology.  I had high hopes that we would soon not only cure autism and depression, but also laziness, stupidity and antisocial behavior by chemically stimulating and/or replenishing the appropriate regions of the brain.   We could go beyond mere normalcy to enhance or access specific parts of the brain in new ways; perhaps there was a drug that would make us smarter, improve our ability to do math, or even allow us to perceive the hidden dimensions which string theory says are rolled up into the four that are usually available?!  The possibilities seemed infinite.  Thanks to science, we could overcome the limitations imposed on us by imperfect nature.

I knew that many of our drugs were originally derived from plants. In my the course of my pharmacological studies I read books by researchers who, e.g., studied with shamans in the Amazon, where they investigated medicinal plants which they brought back with them to the laboratory to extract and refine the biochemically active components, which would eventually be synthesized as pharmaceutical drugs.  I believed that natural herbal substances were primitive and inferior.  Extracted drugs were "better" because the active ingredients were purified, concentrated and standardized for dosage, and synthetic drugs were better still, a vast improvement over nature.

I vividly recall an incident in the early 1980s where I was visiting a childhood friend and his fiance' at their home.  They had several bottles of vitamins and herbal supplements on their kitchen table and I questioned, "What is this?"  My friend said, "We've been making an effort to get healthier.  She has convinced me to start eating organic foods and take vitamins and stuff."  "All food is by definition organic," I pointed out.  "As for this other stuff, if it actually worked, the doctors would be prescribing it!"  They exchanged a knowing glance and then his fiance explained, "Doctors might not know about it because they don't study supplements in medical school.  One of these products is folic acid, which is important for preventing neural tube defects - just in case we might get pregnant!"  They gazed into each other's eyes, holding hands and smiling.  I snorted and rolled my eyes, although I had to admit my formerly pasty old friend looked better than I'd ever seen him, with beautifully clear, radiant skin.  I told myself it was probably just a result of being In Love.  I was surprised when the CDC coincidentally recommended folate supplementation to prevent neural tube defects in 1991.

That same year I had my first experience with serious illness and the unexpected limitations of Medicine.  After my escape from the NICU as an infant, my subsequent childhood had been remarkably disease-free.  I was the child who never got sick.  Even when an illness swept through school and everyone around me was quite sick, I might feel a bit under the weather for a day or so, and then bounce back.  As an adult, I had likewise seemed impervious to disease, with an incredibly strong constitution.  The poster girl of good health, I swam and surfed in the ocean in winter without a wetsuit, rode horses, hiked up and down mountains, danced and did yoga, grew organic vegetables (yes, I finally decided my friends were right), and with the exception of surgeries for appendicitis in college and a near-fatal auto accident in 1988, my only reason for seeing doctors was to obtain birth control.  While those surgeries were ultimately successful in saving my life, in both instances awful things were done to me without my fully informed consent, resulting in a profound and lasting fear of interacting with doctors, at least as a patient.  I may discuss this in another blog post, but what is interesting is that these experiences did not damage my high opinion of Medicine; rather, I considered these events bizarre aberrations to be blamed on the particular offending doctors, and not a reflection on the medical system as a whole, in which I continued to have the utmost faith despite my personal terror.  

That only began to change at the beginning of 1992.  In the summer of 1991 I was suddenly struck by a flu-like illness that came out of nowhere (no apparent vectors of contagion) and knocked me on my ass, as described here.  After subsequent recurrent bouts of pneumonia, by early 1992 I had used up all my sick days, for which I was about to be fired.  Back then employers could fire you for being sick; I don't know if that is still the case these days.  Anyway, I went to my doctor again to find out what the hell was wrong with me and he took a lot of blood to test for everything under the sun.  When the results came back, he said, "The good news is, all your blood work came back negative - HIV, Lyme, EBV, etc."

"Great," I said, "So that means there's nothing wrong with me!  But... then why do I keep getting sick?"

His expression sad and compassionate, he said gently, "You have Chronic Fatigue Syndrome, more specifically, the Immune Dysfunction variety."

"What?!" I was annoyed, and protested, "That's not a real disease!  That's like the Yuppie Flu, I read about it in the newspaper, it's a mental thing!  And you said all my labs were negative?!"

The doctor explained, "No, unfortunately it is all too real, and it is physical, not mental.  It is a serious illness.  Since we don't know what pathogen causes it, there is as yet no specific lab test, making it a diagnosis of exclusion."

"Diagnosis of exclusion?  What does that mean?!"

"It means that we test for every other possible known disease that could be causing these symptoms, and rule them out.  With all other possibilities being eliminated by negative labs, the default diagnosis is CFIDS."

This sounded quite dubious to me, but he was after all the Doctor.  I said, "Umkay....  So, what is the treatment?"

"There is none.  I am so sorry."  ?!

I was speechless.  Not only had I been diagnosed "by exclusion," i.e. without any laboratory evidence, of a serious disease which I'd previously been led to believe was a mental condition and had somehow managed to destroy my immune system, but also, there was no treatment.  This wasn't supposed to happen.  The Doctor was supposed to have the answers.  When I went in there I was confident that he would have used our advanced medical technology to analyze my blood work and figure out exactly what was wrong with me and then prescribe the appropriate drugs to cure it.  At that moment my absolute faith in Medicine was seriously shaken for the first time in my life.

That was 24 years ago and as of today, we still have no definitive lab test for CFIDS and the cause of the disease has not yet been identified.  In fact, in the absence of any specific viral etiology, we seem to have gone full circle, with some doctors returning to the old theory, "it's all in your head" despite research to the contrary by neurologists and immunologists.  Now, I am a proponent of "mind over matter" to a certain extent; for example, as a yoga adept I can exert conscious control over my heart rate and blood pressure.  However, it seems really unlikely that I could, by sheer negative thinking and/or bad attitude, cause my B lymphocytes to misbehave, thereby inducing the recurrent viral, bacterial and fungal infections.  In any event, like most other chronic illnesses, there is no cure or even reliable treatment for symptoms.

Over the years, my dear mother suffered horribly from the ravages of type 1 diabetes despite having "the best medical care available," which mostly involved hacking off bits of her limbs.  In 2009 she was blind, demented, had lost the use of her hands and was confined to a wheelchair.  The doctors were able to keep her "alive" or rather, prolong her misery for another year, by a final surgery that left her with just a stump of femur and agonizing "phantom pain" that was far worse than the actual leg pain had been, unremitting until the day she died in 2010.  Contrary to the high hopes I held as a child, there is still no cure for diabetes and more people have it now than ever.  In 1966 1.45% of the population was diabetic, and as of 2014 the number has jumped to 9.3%, per the CDC, many of these involving an alarming trend of type 2 diabetes among children, which was previously unheard of.

Along with diabetes, we have seen a steep increase in other autoimmune diseases including Guillain-Barre, lupus, Hashimoto’s thyroid disease, MS (multiple sclerosis), IBD (inflammatory bowel disease, which includes Crohn’s disease and ulcerative colitis), celiac disease, and asthma.  Although vaccine-preventable diseases and most infections have declined, antibiotic-resistant bacteria are now becoming a huge problem, and meanwhile the rate of autoimmune disorders has tripled over the last 30 years, leading some researchers to suspect that we may have traded one set of diseases for another.

President Nixon declared a war on cancer in 1971 and we still have no idea what exactly causes it, let alone how to cure it.  While cancer death rates have declined, the incidence is rising, with 1 in 2 men and 1 in 3 women developing cancer in their lifetime.  Some try to explain this away by saying, "It's just because we are living longer," but cancers among children and young people are also increasing.  "About $200 billion has been spent on cancer research since the early 1970s, and the five-year survival rate for all people diagnosed with cancer in the U.S. has risen from about 50 percent in the 1970s to 65 percent today."  - LiveScience  So, after 40 years of research, 15% more cancer patients survive for 5 years after diagnosis, but it must also be taken into consideration that we are diagnosing them sooner as well, which may inflate the survival figure.  A cure remains elusive and, disappointingly, some experts seem to have given up and are now saying that we ought to change our approach and just treat cancer as a "chronic illness" to be treated with periodic chemotherapy.

As for Charles, in the 1960s 4 in 10,000 children like him were diagnosed with autism, whereas today the rate is 1 in 68, per the CDC.  The experts assure us that there is no actual increase in the number of children with autism, rather, we've just changed the diagnostic criteria to include milder cases and some which were formerly diagnosed with mental retardation or other disabilities.  However, I can't help wondering, regardless of the diagnostic label, where were all those other kids like Charles when I was growing up?  Were they hidden someplace?  Maybe I'm just not remembering them, but it seems to me, years ago it was relatively rare to meet developmentally disabled children by whatever definition.  Whether or not their numbers have increased, we are no closer to finding a cure or even identifying a cause for their disability.

My personal diagnosis of a serious, incurable and essentially untreatable chronic illness in 1992 forced me to realize that my childhood faith in "science-based medicine" and my expectations of what it could do, were unrealistic.  Still, I wanted so very badly to believe in its power!  And I continued to do so for a while, thinking that perhaps its failure in my own case was just a rare fluke.  Although I didn't realize it at the time, in retrospect that belief reflected my conditioning as a patient, namely, to discount the evidence provided by our own body and senses when it questions the establishment dogma.  Any data obtained through our personal experience was, at best, "anecdotal," an isolated incident from which no useful conclusion could be drawn.  Back in the days before internet discussion boards, the illusion of isolation was easier to maintain because we didn't know about all the other patients in similar situations.  Medicine worked! - and if it didn't work for me, there must be something very wrong with me.  I later learned in the course of my career in the field that this attitude is reflected in the medical language itself, when we say, for example, "The patient failed chemotherapy."  As my faith gradually waned over the years, my initial enthusiasm eventually turned to disillusionment, and medical technology reminded me increasingly less of the Bionic Woman and more of the Borg.

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