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, SkepDoc, Skeptical 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.

"Rising Body Count" Results in Supplemental Hysteria

My eyes are a little tired from all the rolling they did last night while watching a t.v. "documentary" about dietary supplements on Frontline, "Supplements and Safety."  This could explain why, in the process of following up on the issue online today, I managed to mis-read an article on Forbes entitled, "Death by Dietary Supplement" which said Lamar Odom was found unresponsive after taking "10 tablets of herbal Viagra," "yet another statistic in the body count racked up by 'herbal supplements.'” I assumed the title of the article referred to Mr. Odom's death, but then realized I had missed three little words, "very nearly became" where it said he had emerged from the coma.  He didn't die, whew!  So, who did?  And what is the current body count?  Apparently nobody knows.  BTW, I learned from other sources that the author neglected to mention a minor detail:  Mr. Odom's near-statistic happened with the overdose of "herbal Viagra" plus cocaine, probably not a safe combination.

The author, Henry I. Miller, who claims to "debunk junk science and flawed public policy" says later in the article, "But because of irresponsible, two-decade-old legislation, [DSHEA] the answer to the critical question, 'How many Americans are killed each year due to ingestion of so-called dietary-nutritional supplements?' cannot be answered."  He claims that the "Dietary Supplements Health and Education Act of 1994" exempted supplements from regulation by the FDA when in fact, the opposite is true - it specified how supplements were to be regulated.  In any event, Miller says as a result of the DSHEA, in some unclear manner, numerous deaths caused by supplements are being hidden from the public.  The article ends by urging more stringent regulation of supplements, otherwise, "the body count will continue to rise."  But, I was unable to determine from reading the article how many people, if any, had died.

That's why I went online to look it up today, because the Frontline "documentary" led me to believe that people were dropping like flies from taking supplements, and being a holistic wellness counselor and a consumer myself, this seems like important information that I should know about.  Considering that half of all American adults, approximately 150 million people, use supplements, I would expect that there would be some deaths, at least a few.  I mean, even excessive intake of water can result in death, and people do die every year from "safe" OTC substances.  For example, about 458 people die per year from liver failure due to acetaminophen.  I looked it up multiple different ways, but despite extensive googling, I could not find the "supplement body count."  

In the process of searching for the elusive supplement death statistics, in addition to Mr. Miller's article, I found several others with alarming titles such as, "Supplements Now More Likely Than Medications to Cause Death," "The Risky Business of Dietary Supplements," "Dietary Supplements Lead to 20,000 ER Visits Yearly," "Vitamins and Supplements May Lead to Earlier Death," and "Death By Supplements," none of which actually contained the information about how many people died.

The American Cancer Society website said that 2 people had died from supplements in 2013, but Clinical Toxicology disputed that.  Ephedra was mentioned as a killer in the Frontline program and when I looked it up, I learned that according to the New England Journal of Medicine, it had been used by 12 million people, with a total of 21 deaths between 2001 and 2004, when it was banned by the FDA, and 2 more between 2005 and 2007, after which there were no more ephedra deaths.  Interestingly, ephedrine, the drug derived from ephedra, remains available without prescription.

The other death specifically mentioned in the Frontline program was a woman from Maui who died of liver failure in 2013 due to using a diet supplement from a bad batch when the supplier of one of the ingredients in China sent the wrong substance, unbeknownst by the manufacturer of the supplement.  A total of 30 people got sick and several required liver transplants; the woman who died was turned down for transplant because she also had breast cancer (a factor not mentioned on the program).

Likewise, my search revealed that a contaminated batch of L-tryptophan killed 28 people in 1989, possibly as a result of faulty genetic engineering of the bacteria used in its production.  In this case as in the one above, the poisonings were a result of contamination; the supplements in their original formulation had been safe.  

I ran across a 2007 article in the New York Times which stated:  "In April 2004 the Food and Drug Administration (FDA) said it had received 260 reports of deaths associated with herbs and other non-vitamin, non-mineral food supplements since 1989."   No footnote was provided, however, and despite extensively searching the FDA archives and the CAERS (Center for Food Safety and Applied Nutrition Adverse Event Reporting System) database, I was unable to find any documentation of this statement.  The FDA did indicate that incidents reported to CAERS, like VAERS (Vaccine Adverse Event Reporting System) are reports only, not established cases.  But to be generous, in the absence of better data, let's assume for the sake of the argument that there actually were 260 supplement-related deaths from 1989 to 2004.

Poison Control Center data from the AAPCC Annual Reports reveals a total of 179 deaths contributed to by vitamins, minerals and botanical supplements from 1999 through 2014, for an average of 11.2 per year.  No reports are available prior to 1999.  Given the 260 "reported but not verified" deaths from 1989-2004, minus the known 111 deaths from 1999-2004, let's estimate 149 deaths from 1989-1998.

So, as best as I've been able to determine from the data available, since 1989 the "body count" for supplements, including those adulterated, overdosed, or used in unwise combinations with, e.g., cocaine, is approximately 328, or an average of 13.1 per year.  This pales in comparison to the 128,000 per year who die from thoroughly regulated and properly prescribed drugs and fewer than the 458 deaths from OTC acetaminophen in 2014.  But, it's still 328 deaths too many, of course.

Yes, people are dying from supplements - over 300 people in the last 25 years.  Something ought to be done!  There ought to be a law!  Oh, wait, there is - the DSHEA.   In contrast to the claims made by Frontline and Mr. Miller et al, the FDA does regulate supplements to ensure they are not contaminated by dangerous adulterants and that their contents are accurately labeled.  The law is in place, it just needs to be enforced.  Per the FDA website:

"Under the Dietary Supplement Health and Education Act of 1994 (DSHEA):

Manufacturers and distributors of dietary supplements and dietary ingredients are prohibited from marketing products that are adulterated or misbranded.  That means that these firms are responsible for evaluating the safety and labeling of their products before marketing to ensure that they meet all the requirements of DSHEA and FDA regulations.  

FDA is responsible for taking action against any adulterated or misbranded dietary supplement product after it reaches the market.

Under existing law, including the Dietary Supplement Health and Education Act passed by Congress in 1994, the FDA can take action to remove products from the market, but the agency must first establish that such products are adulterated (e.g., that the product is unsafe) or misbranded (e.g., that the labeling is false or misleading)."  

This sounds like very good and reasonable regulation:  Ensure that supplements are not unsafe or adulterated with drugs or chemicals, and that the label accurately reflects the contents, in the same way that, e.g., if the label on our box of cereal says it is made from oats, it must contain clean, high quality oats and not moldy rye, asbestos or wood pulp.  That way the consumers will know what we are getting.  We can do our own research on the ingredients to help us decide whether or not we want to purchase the product.  And if after purchase and consumption we are not happy with the product, many if not most supplement companies will gladly provide a refund on these relatively inexpensive products.  At least, that has been my experience as a consumer for over 20 years and I haven't been disappointed yet.

But, that isn't good enough for the supplement critics, who are not just concerned about potential contamination with dangerous chemicals or incorrect labeling.  Rather, they contend that these natural substances themselves are neither safe nor effective until proven otherwise.  They want vitamins, herbs and other natural supplements to be subject to the same regulatory process as pharmaceutical drugs, with the manufacturers required to conduct clinical trials proving both "safety and effectiveness."  They know that this would essentially put the supplement companies out of business, because the process is too expensive to be conducted on behalf of unpatentable natural substances.  It wouldn't make business sense to invest in funding the clinical trials when, if successful, other companies would then be free to sell the product at a competitive price.  Pharmaceutical companies are able to pay for the clinical trials only because they own the patent on the drugs they develop and therefore once approved, they can set a high price and make the profit necessary to recoup their investment without competition.

Regarding "safety," to keep things in perspective, let's take another look at the statistics: 60% of adult Americans, or about 180 million people, take prescription drugs which have been "proven safe and effective" according to existing regulations, and 128,000 of them die every year, sometimes prompting recalls of medications already established as "safe."  This is in contrast to the 150 million who take the allegedly "unregulated" supplements, of whom approximately 13.1 die per year.  Now, it has been argued that adverse events with supplements are under-reported, which may be true, but this is a phenomenon that is well-known in medicine generally and would apply to pharmaceuticals also, and in any case is unlikely to account for the discrepancy of approximately 8142:1 deaths from drugs:supplements.  

For that matter, if it is really "safety" or "death" that is prompting the hysteria over supplements, I don't notice anybody lobbying for the regulation or banning of soda pop, which kills 25,000 Americans per year and has no beneficial effects - other than monetary profit for the companies selling it.  And dentists and endocrinologists.  Oh, and the pharmaceutical companies who sell diabetes drugs.  Ok, never mind, I guess soda pop is good for the economy, at least the medical industry or what the New York Times calls "the healthcare economic sector."

I was a bit surprised to learn recently that the skeptics are especially opposed to homeopathy.  They expressed disappointment that the Frontline show did not address this, "pure quackery, one of the purest quackeries that exist," based on the principle that "like cures like" and using a very tiny amount of a substance that would provoke the symptoms of an illness to help the body mount a defense against that illness.  Ironically, this is the same principle involved in vaccinations, the only "mainstream" treatment to employ homeopathic theory.  The difference is that vaccines actually contain a measurable amount of disease material, whereas classical homeopathic remedies are so diluted that they contain only the "vibration" or "memory" of a substance.  So if the main ingredient was, say, duck liver, there will in fact be no molecules of duck liver remaining in the final diluted product; about the best we can say is that at one time, the water in that vial was near a duck.  Some proponents of homeopathy try to explain its actions in terms of quantum physics, particularly Bell's theorem and non-locality, which seems halfway plausible except that physicists generally don't like it when we try to apply quantum theory to events on a macroscopic level, and the skeptics scoff at such theories.  

In any case, from the mainstream perspective, since homeopathic remedies essentially consist of water, their efficacy, if any, can only be placebo.  If they have zero physical effects, then clearly they cannot harm anyone.  Why, then, does the public need to be "protected" from homeopathy?   

When we dig deeper into the objections against supplements, opponents finally admit that biochemical safety per se is not their only concern.  They also want to protect the public from financial harm because they believe that even if safe, natural supplements don't work, a belief which I myself once held.  They assert that people who use supplements are anti-scientific and need to be saved from our own gullibility.  We must not be allowed to spend $12 on a jar of benign herbs, a vial of water or a few granules of sugar.  The public needs to be "protected" from spending our own money foolishly. 

It's so nice of the critics to be concerned about my finances and saving me from making foolish purchases!  My mom and dad allowed me to start spending my own money as I pleased when I was around 16.  So thanks, nanny science guys, for going above and beyond the call of duty.  While we're on the subject, maybe you could do something about lipstick regulation, which IMO is far too lax.  I recently bought some special Star Wars lipstick and while it didn't injure me or make me sick, it also did not transport me to a galaxy far, far away, give me power over the dark side, or even improve my skill at Jedi mind tricks.  Of course, these attributes were not actually promised, but they were certainly implied by the commercials, and it turned out to be just regular old lipstick with a "Star Wars" label on it.

But, getting back to medicine.  Pardon my skepticism, but I have trouble believing that the skeptics have a science-based concern about how I squander my money.  Unless, perhaps, they have a vested interest in my spending it on mainstream pharmaceuticals, and are worried that I might spend it elsewhere.  That, after all, is the popular "conspiracy theory" as to why the pharmaceutical lobby is trying to regulate natural supplements out of existence - competition.  Dr. Stephen Barrett at Quackwatch refutes this theory, however, saying:  "Standard medicine and 'alternative medicine' do not actually compete for patient dollars. Well-designed studies have shown that most 'alternative' methods are used in addition to—rather than instead of—standard methods."  

It's true that sometimes the two systems are complementary, e.g. mainstream doctors suggest that their patients take a probiotic supplement to offset the dysbiosis caused by antibiotic use, coenzyme Q10 to correct deficiency caused by statins, or cannabis for side effects of chemotherapy.  So they are by no means mutually exclusive.

However, in my own experience and that of many other consumers, sometimes people turn to alternative medicine precisely because mainstream medicine did not work for them and/or had unacceptable side effects.  And despite the lack of double-blind controlled studies and clinical trials "proving" efficacy, the reality is, if natural supplements and/or homeopathic remedies didn't "work," people would not buy them.  At least, they would not continue to buy them.  "Placebo" or not, nobody is holding a gun to anyone's head and forcing the purchase, and unlike pharmaceuticals, most good supplement companies happily provide a money-back guarantee if you're not satisfied.  Consumers buy these products because they are obtaining some perceived benefit.  Of course, we must be delusional because there is no "proof" and the data we acquire from personal experiments in the laboratory of our own bodies and lives is purely "anecdotal," all 150 million of us and the millions before us who have used natural remedies throughout history.

A legally enforced money-back guarantee on top of the existing safety regulations would protect consumers of supplements on both ends.  But, the critics don't want people to be able to experiment and decide for ourselves.  It's not enough to enforce the existing law that prevents the sale of substances that are dangerous, adulterated or inaccurately labeled.  The consumers need to be "protected" from spending our own money on inexpensive products that are safe, but don't work.  We rather ought to be taking expensive pharmaceutical drugs which are "proven safe and effective," despite our own experience and the body count which might suggest otherwise.  

Diary 08/15/2014

I was going to keep a diary.  The first entry was on August 3, nearly two weeks ago.  Since then I've been busy with a number of things, primarily attempting to fix my computer which kept crashing, in the midst of looking for work and sending out proposals to local lawyers and doctors.  I also had intended to put in a full 8 hours a day on the Famous Psychic Line Which Cannot Be Named Due To Contractual Reasons, but as usual, my intention was thwarted by the daily occurrence of entropy in one form or another, requiring my time and attention.

On Tuesday it became clear that the sinkhole which opened up just 20 feet from the trailer, and which had been filled with "holy rubble" from Parkway Presbyterian Church's old sign when they got their new electronic one, subsequently topped by a mixture of dirt, crushed concrete and asphalt (which I was assured "won't wash away!"), was reasserting itself since the recent rains.  I called Triangle Construction to obtain crushed concrete which I knew would NOT wash away, based on my experience using it to repair the driveway by Lothlorien House.  They said they were out, and wouldn't have any more for at least a couple of weeks.  And more storms were approaching!  So I did the only thing I could do, which was to put a heavy tarp in the back of the El Camino and proceed to shovel about 2 tons of the concrete that I still had left over from the driveway into the truck and take it over to the sinkhole.  Since the El Camino has a weight capacity of around 1000 pounds, this took me 5 trips.

The fact that I was physically able to do this is, of course, evidence that I am not "disabled" per se.  However, I was completely exhausted and hurt like hell, barely able to get out of bed on Wednesday and Thursday.  This is characteristic and one of the defining symptoms of CFIDS, that any physical exertion requires a couple of days for recovery.  I am starting to feel more "normal" (or what passes for "normal") today.  As usual, though, I once again woke up after just about 5 hours of sleep and tried with limited success to go back to sleep for a few hours.  Were I to get up at that point, I would have been nauseated, in pain, shaky, light-headed and brain-fogged, which is what happens any time I do not get at least 9 hours of sleep.

When I got up a few hours later, I had a phone message from the very prestigious medical transcription company whose recruiter had approached me about joining their team.  I had previously interviewed on the phone with her and also completed a series of very extensive and difficult tests and sent in my application, not expecting much.  My accuracy was high but my speed was quite slow.  Having quit my previous transcription job in April when it became painfully obvious that I could no longer type well enough to do it, I really was not looking for a transcriber position.  But, because this company has a great reputation and they only hire the very best, I was flattered that they asked me, unsolicited.  They had seen my resume' on a site where I had posted, looking for a medical editing, writing or records review opportunity.  My ego along with my financial desperation got the best of me and I began to think excitedly, "Maybe I can do this!"

Upon learning more about the pay scale, the hours and productivity requirements and doing the math, however, I realized that at my speed I would be lucky to make approximately $6/hour before double (contractor) taxes and would have to put in far more hours than I could reasonably handle along with my other jobs.  If I quit my other jobs and did the transcription at least full-time, I might be able to make around $9/hour, but that's not an option because I cannot type more than 6-7 hours per day, at best.  And I am extremely reluctant to quit my psychic/ counseling and yoga teaching jobs, not only because I love them, but also because the transcription company requires at least 99.5% accuracy along with the minimum production volume, and thus has a high turnover rate.  If I could not keep up, which realistically I have about a snowball's chance in hell of doing, then I would be left with nothing.  So I returned the phone call, reluctantly declining their offer.

People thought I was crazy.  I had to explain to my friends on Facebook why on earth I would turn down such a great opportunity:  Because I can do math, and I can't live on $6/hour, work 8+ hours per day, and/or be on-call 24/7.  It's just not physically possible.  If the pay was higher and the hours shorter, maybe I could do it.  Maybe.  That's why I am still open to the idea of transcribing part-time for a local doctor, where I could set my own hours, and make more money by eliminating the middleman.  I would prefer, however, to do the medical records review (higher pay, more analysis and less typing), but have not heard back yet from any of the lawyers to whom I sent proposals last week.

And once again, as usual, another friend wanted to know, "Well then why don't you just get on Disability?"  I explained that I don't qualify because according to what I was told when my SSDI was turned down in 1995, in the State of Florida you're not "disabled" if you can still talk on the phone from home - which is what I am doing now, on the psychic and counseling lines.  And I was much sicker back then.  Besides, having transcribed quite a few SSDI reports, I am all too aware of how the system works and just how "disabled" you have to be, in order to qualify.  I've seen many patients sicker than myself fail to meet the criteria.

I don't want to be "disabled" anyway.  I want to be productive.  I want to make money, preferably doing something that I enjoy and am good at, although perhaps that is asking too much.

The Psychic Line has been picking up a bit the last few days, thankfully.  And I still remain optimistic that California Psychics may hire me as well.  This is, after all, the job that Social Security told me I ought to be doing, and maybe they were right.

First Diary Entry

Sunday, August 03, 2014

I am writing this diary at the suggestion of a CFS patient who said that doing so helped her obtain SSDI, not that I have the slightest confidence that it will do any good.  The SSDI criteria are very clear and specifically state that symptoms as described by the patient are irrelevant.  In other words, it doesn’t matter how shitty you feel, or how much pain you are in, or how exhausted.  They want “medical proof” in the form of lab tests, which of course there are none conclusively proving CFIDS.  When my claim was turned down in 1995 I was told, “CFIDS is not a recognized disability in the state of Florida because you could still work at home as a telemarketer.”  Well no, I really could not, only because I totally suck at sales, but that is a story for another time.  CFIDS was “recognized” in California, where I was in the preliminary stages of being approved when I moved here.  I knew I didn’t have a chance when a claim right before mine was denied:  An 18-year-old boy, quadriplegic, who had figured out a way to type by pressing the keys with a pencil held in his mouth; Florida declared him not to be disabled because he could type.  Clearly I can type, as I am writing this diary.  Nevertheless, FWIW –

I was going to start this diary last week but was too tired.  I am drinking a cup of coffee.  Really shouldn’t, as it will certainly make the muscle spasms and pain worse and interfere with my sleep, but I was too exhausted.  Today began as a typical day living with CFIDS:  I awoke in the early a.m. after just about 4 hours of sleep, felt like shit, started to panic until I realized I didn’t have to get up until much later.  Managed to go back to sleep.  Awoke again around noon, still feeling like shit physically.  I overdid it yesterday on the landscaping although I got very little done.  That happened last weekend too, when I did renovations on Saturday and had to spend Sunday and Monday in bed, and began to feel halfway normal by Wednesday.  As I thought about all the things that need to get done around here, which I don’t have the energy to do, the familiar panic ensued, an overwhelming sense of impending doom, like a heavy weight on my chest that almost prevents me from breathing.  I say a prayer, “God, I can’t handle my life, please help me.”  Deep breath.  I tell myself I don’t have to accomplish that much today; I can clean tomorrow, the yoga student won’t be here until Tuesday.  I make myself do some yoga stretches and breathing in bed.  I don’t have the energy but I know it will make me feel better.

Interestingly, it seems easier to be determined “Disabled” in Florida for mental issues rather than physical ailments.  I have heard of people getting on SSDI for having panic attacks.  I am tempted to pursue that angle instead, but quite frankly I would be embarrassed to receive Disability for something that silly, especially after being seriously ill for so many years.  And my panic is, of course, secondary to the physical condition which makes it very difficult to do things such as making a living, and is therefore kind of an appropriate response.  Likewise, depression.  Until fairly recently some doctors believed that CFIDS was caused by depression.  Now the general consensus is that the disease has a viral etiology.  When I was first diagnosed, the doctor asked me, “Do you think you are depressed?”  “Yes!” I replied.  “I’ve always been a very positive person, but now I’m sick, I’ve lost my job and my beautiful home on the mountainside overlooking the ocean, and I have no idea how I am going to survive.  So, I think my depression is quite appropriate to the situation.”  The doctor agreed.  Am I depressed now?  Yes.  But even if I were willing to take toxic drugs to improve my mood, obviously it would not do a damn thing to change the circumstances.  I would still be physically sick, drowning in debt, essentially jobless, and forced to sell my home.  Actually it would make the situation worse, since I don’t have insurance and the doctor visits and drugs would only increase my debt.

Well, I have finished the small cup of coffee and feeling slightly more alert, although the pain in my shoulders has worsened and I catch myself wanting to grind my teeth.  I really can’t handle coffee.  At least not drinking it.  My immune system has been poor lately, as evidenced by skin lesions, breakouts and yeast.  I think I will do a coffee enema (per Dr. Gerson protocol).  I heard on Dr. Oz the other night that coffee enemas can actually cause a severe electrolyte imbalance resulting in arrhythmia and death!  I was surprised to hear it, and have had no such luck in the several years that I have been occasionally doing the procedure.  Of course, if I really wanted to commit suicide, all I would have to do is get a job as a receptionist in a doctor’s office.  Not an orthopedist or plastic surgeon, but rather, a general medical or infectious disease specialist, where lots of contagious patients go.  That would probably kill me within a couple of months.

Meanwhile, here I am.  Still living, still breathing.  The animals are not going to feed themselves and the house is not going to clean itself.

My Battle with CFIDS

[This was originally published in September of 2013 re: the history of my illness. ]

Until pretty recently I did not publicly discuss the dirty secret of my disability, because thanks to holistic medicine, my disease had been in remission for 15 years and I believed it was "cured," although mainstream doctors said that was impossible.  Also, I did not want to be thought of as "disabled" and I did not perceive myself that way.

In the spring of 2013 I had a relapse of the disease from which I am still recovering as of September.  This has had a profound effect on my lifestyle, especially my ability to make a living, and it inevitably came up in conversations, e.g., "If you're broke, why don't you just go out and get a regular job?!" [assuming such jobs were even available in this town, which is dubious].  When I replied that my health won't permit it, naturally my friends asked "Why, what is wrong with you?"  Unless you happened to notice the dark circles under my eyes, you would never know I was sick.  I appear quite healthy, indeed ripped, thanks to yoga, pilates and a lifetime of athletic hobbies and living on a farm.  Even in my relapsed condition I am in better shape than most people my age, significantly stronger than most women and probably than some men; on a good day, that is, when I can throw around 70-pound hay bales and carry a 5-gallon water bucket in each hand through deep mud.  On a bad day, it's hard to get out of bed, and a shower is a major undertaking.

Now that everyone is asking, I decided to go ahead and be open about it.  Rather than repeat myself with every inquiry, I will refer people to this blog post.

What is CFIDS?  "Chronic Fatigue Immune Dysfunction Syndrome."  It is a viral (not psychological) illness for which the specific causative virus has yet to be found.  Over the years the culprit has been named as polio (which I suspected), Epstein-Barr, Coxsackievirus (my immunologist's favorite), HHV-6 and even XMRV (recently disproven).  Nobody is sure, but my personal theory is that this immune dysfunction can be triggered by a number of viral agents, including natural diseases and live-virus vaccines.  The earliest cases were regarded to be "atypical polio," and in Europe the disease is called, "myalgic encephalomyelitis."  In modern America it was nick-named "The Yuppie Flu" and largely dismissed as a mental disorder or sheer laziness, "Shirker Syndrome."  While immunologists have long suspected a viral cause, only in recent years has the mainstream begun to acknowledge CFIDS as a "real disease."  The symptoms include crushing fatigue, muscle pain and "brain fog," loss of balance or coordination, swollen lymph nodes and extreme susceptibility to contagious diseases like a cold or flu.  You can read more about all this at The National CFIDS Foundation.

Some "alternative medicine" proponents like to say that CFIDS is caused by poor diet, food allergies, environmental toxins, lack of exercise, depression or negative attitude.  I do not deny that this may be possible for some patients, since all of these things can contribute to immune dysfunction.  But in my own case it seems unlikely.  Here is my personal story.

I was a very healthy child, rarely got sick even when illnesses went around the school.  I never had the "usual childhood diseases."  My family had a reasonably healthy diet (for Americans in the 1960s) and a very active lifestyle.  I was raised with swimming, surfing, hiking in the mountains, horseback riding, roller skating, ballet, gymnastics, etc.  I was frequently bathed in dirt, sweat and sunshine.  At age 12 I became a strict vegetarian and soon thereafter began my lifelong practice of meditation and yoga.  By age 25 I was doing yoga a couple of hours a day and when I was involved in a near-fatal auto accident in which my intestines were torn when squished against my spine by the seatbelt, I seemingly had an amazing recovery and was out of bed doing yoga in the hospital, standing on one leg with my foot above my head, much to the nurse's alarm!  I appeared very strong at that time, but that intestinal rupture may have been the source of the virus (whether polio, from the live virus vaccine, or naturally occurring Coxsackievirus) which a few years later resulted in CFIDS.

Having bounced back from the auto accident, I resumed my intensive daily yoga practice at morning, noon and night, and on the weekends hiked in the mountains, rode horses and swam in the Pacific Ocean without a wetsuit.  I was essentially the poster girl for a healthy lifestyle.  The one area where I struggled was with lack of sleep, which my immunologist felt was the major contributing factor in the development of my illness.  I had never been a morning person, and working 8-to-5 was difficult for me.  No matter what time I went to bed, I couldn't fall asleep before midnight and had a very hard time getting up at 5:30 to be at work by 8:00.  I hated my low-paying clerical office job, would have preferred to do something "meaningful," but it was just a way to pay the bills so I could go home and meditate and have fun on the weekends.

In the summer of 1991 I suddenly came down with a flu-like illness which struck me down for a whole week.  I had fever, swollen lymph nodes, sore throat, nausea, fatigue and extreme body aches and could barely get out of bed.  I went back to work the next week and started to feel somewhat better, but never quite recovered to my normal level of energy.  Two months later I had the same illness again and lost more work, but couldn't really afford to take off any more because I had already used up my allotted sick days.  My landlord, who was a doctor and whose son had HIV, asked me about my symptoms and seemed very worried.  People at work also gave me worried glances and whispered that I looked like "an old woman" clinging to the railing to limp up the flight of stairs to my office.  I somewhat recovered from the weakness, but my immune system did not.  Previously the person who never got sick, now I caught every cold or flu that went around the office.  If somebody sneezed across the room I would catch their cold, and soon it would settle in my chest and I had pneumonia.

I began to miss more work and in early 1992 had already used up all of my allotted sick days (I think there were 7) as well as my vacation days.  I went to the doctor with my latest bout of pneumonia and said, "Doc, there is something really wrong with me.  I never used to get sick like this."  He interrogated me at great length and took a bunch of blood.  HIV was the first thing they tested for, and fortunately it was negative.  I got more antibiotics and went back to work although I was dragging my body along and could barely concentrate on my job due to pain, fatigue and brain fog.  After a couple more weeks I was very sick and made another appointment with the doctor.  He gave me more antibiotics for the persistent pneumonia and said, "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, it's a mental thing!"

The doctor's expression was very compassionate and he said, "No, unfortunately it is all too real, and it is physical, not mental.  It is a serious illness."

I asked, "Ok, so what is the treatment?"

The doctor replied, "There is no treatment.  But, our bodies were designed to heal themselves, given the proper support.  You're going to have to make some changes.  You can't work anymore.  You must rest.  I am going to put you on Disability."

When I returned to the office that afternoon, my boss told me, "You have used up all of your sick days and we need employees who can be here and work consistently.  I am sorry, but you are fired."  I thought this was really unfair, especially since one of my coworkers had recently been given 3 months of paid leave for voluntarily having a baby, and I had been covering a lot of her work, and I also often covered for other coworkers when they had to take off for school events or to care for sick children.  But, they couldn't fire me, because I was legally Disabled.  I handed her the paperwork from the doctor and she was quite taken aback and asked, "How long are you Disabled for?"  I told her the doctor said it might be permanent.  One of my know-it-all coworkers snapped at me, "Your doctor is a f*ing quack!  If he can't cure you, find one that can."  I replied, "There is no cure."  She, a layperson with zero medical knowledge and having, like most laypeople, an unwarranted faith in medicine, responded, "Oh, you'd be surprised what the doctors can do these days!"  Under my breath I said, "and you are a dumb bitch," and left my job.

But I didn't want to be Disabled.  I couldn't accept that.  So while staying with friends, after a couple of months of much-needed bedrest, I began doing gentle yoga and taking walks again.  I tried to do ballet exercises but my legs turned to rubber after a few minutes.  The doctor had told me even if I regained my strength I would not be able to work in an office or with the public again due to my immune deficiency, so I would need a job I could do at home.  He recommended medical transcription, since I already had a fair amount of medical knowledge and had studied pharmacology on my own as a "hobby" for years.  I found a correspondence school (this was before the age of the internet) and passed the coursework with flying colors, had a brief internship, and within a year was certified as a medical transcriptionist.  I was still weak and hurting but eager to make a living again, and in 1993 I got a job making $35/hour.  I only had to work part-time in order to rent the simple but beautiful studio apartment on the mountainside in Santa Barbara overlooking the ocean.  It was lovely!

But, it didn't last. Even 4 hours a day of typing proved to be too much.  My condition continued to deteriorate.  The mainstream doctors could not do anything except scold me for working, give me antibiotics for the frequent "opportunistic infections," and give me Tylenol No. 3 with codeine for the constant pain.  The codeine helped the most.  By taking just 2 a day I was able to almost function like a normal person.  When the DEA changed their policy so that young people with chronic pain could no longer be prescribed narcotics, my doctor had to cut off my prescription.  That is when my condition really worsened.  The muscles in my neck, shoulders and arms had painful spasms and my fingers would no longer type what my brain was telling them to type.  Even brushing my teeth was difficult.

I went back to the doctor and he said, "You must understand that you are very sick.  You will never work again.  I am filing SSDI for you.  Don't worry, you will certainly be approved."  My family urged me to move back to Florida to be near them, as they were sure I would not be able to afford living on SSDI in California.  What nobody expected, and came as a huge shock, is that my SSDI was rejected after I moved to Florida!  Although SSDI is a federal program, each of the states is allowed to use their own criteria as to who will and won't be covered.  I hired a lawyer who was an expert in the field and went through all 3 grueling and exhausting phases of the process, with the endless paperwork, only to have my final appeal denied, because CFIDS was "not a covered illness" in Florida.  They told me, "You can work at home as a telemarketer."  I didn't feel so bad after I learned about a case right before mine, an 18-year-old quadriplegic, who had also been turned down.  Because he had figured out a way to type by holding a pencil in his mouth and using it to press the keys, the State decided that he was not disabled.  Florida is a strange place.

I found a good doctor who was recommended by the CFIDS Association.  He was very nice but could not do anything to help me other than prescribe the frequent antibiotics.  He did recommend antihistamines because I seemed to be allergic to molds and pollen in Florida which caused sinus drainage which could contribute to pneumonia.  When the antihistamines weren't effective enough they added nasal steroids.  I later learned that these medications actually made my condition worse.

My original faith in mainstream medicine, which I shared with most scientifically minded laypeople, had begun to be eroded both by my own personal experience as a patient, and more importantly, by my work in medicine.  But that is another story for another blog post.  I undertook a serious study of holistic and herbal medicine, which I had previously regarded as completely bogus.  Like many people who believe in so-called "evidence-based medicine," I had declared, "This 'natural' crap doesn't work!  If it did, all the doctors would be prescribing it."  But I was very sick and had nothing to lose at that point, so when one of my friends suggested I investigate herbal remedies, I figured what the heck, I'll give it a try.  And it worked.  It worked so well that by 1997 my disease was significantly in remission.  The doctors were amazed.  They couldn't believe it.  They asked, "What did you do?!"  When I told them I was using herbal remedies they said, "But that stuff doesn't work...?"

In light of my remission, the doctors allowed me to return to work, but only part-time, not with the public, and they said I would need to hire a maid because I wouldn't be able to work part-time and still clean house.  Well, they were mostly right but I could not afford a maid.  I worked about 35 hours a week, I rode horses and I surfed on the weekends, and my house was a mess.

When I moved to Panama City in 2001 I found that transcription paid much less and I had to work many more hours to make ends meet.  I continued my study of holistic medicine.  I felt strong, and eventually took on a second job, but I had to be careful to avoid over-exertion and get enough sleep, or I would pay for it the next day.  I even ventured out to sing at karaoke and managed to mostly avoid getting sick.  I opened a yoga studio and taught yoga and pilates.  Nobody would ever know that I had CFIDS.  In 2010 I had the opportunity to study the Gerson Method, which allowed me to tweak my holistic regimen even further and by 2011 I was convinced I was completely cured.

In 2012 my mobile home had leaking pipes which led to a rat infestation, a fire, a flood and black mold.  By the spring of 2013 I had a sudden relapse in my condition.  I could no longer type.  I was exhausted, in pain, and my immune system stopped working and I got all kinds of opportunistic infections.  I learned that this was a result of the black mold (a powerful immunosuppressant).  I moved out of that place in June and began to feel better.  In July my stepchildren came to visit and my stepdaughter, who was frequently ill, told me that she had had strep throat a couple of weeks previously but had been treated with antibiotics and had completely recovered.  To my surprise, I then caught strep throat, and got it bad, up into my ear as well.  Upon doing research I learned that 15% of kids are "asymptomatic carriers" of strep even after antibiotic treatment.  I was very sick for a few more weeks.  I was forced to realize that my CFIDS was not, in fact, "cured" and that my employment options are limited.

Since then I have gradually been recovering my strength, but have had to take on more hours at work in a seemingly futile attempt to pay the bills.  I now have 3 at-home jobs, none of which pays enough to be full-time so I have to juggle them.  The medical transcription only pays around minimum wage now and I can only type for about 7 or maybe 8 hours before my fingers stop working, so in addition I read tarot cards on psychic lines and provide counseling on the internet.  Occasionally I also do housecleaning or painting jobs.  I'm not currently teaching yoga, only because I don't have any students, although with my 3 other jobs I'm not sure it would be possible.  I feel extremely overwhelmed and exhausted.  The typing intensifies the pain in my neck, shoulders and arms.  My waterbed is a necessity, not a luxury.  I sleep 10 hours (the minimum recommended), and wake up still feeling tired, and panicking at the prospect of the day's work ahead of me, and wondering how much longer can I survive like this.  I am sure I could get well again if only I could rest, but it's not an option here in Florida unless I want to become homeless.  Sometimes I just break down and cry.  I think my accomplishments are pretty damn impressive, though, for somebody who the doctors said would "never work again."