The Autoimmune Epidemic by Donna Jackson Nakazawa

[shijing]

I just finished reading this book, recommended by a cousin of mine, and I thought it was quite good. From that website:

In THE AUTOIMMUNE EPIDEMIC: Bodies Gone Haywire in a World Out of Balance—and the Cutting Edge Science that Promises Hope, Donna Jackson Nakazawa lays forth the disturbing ways that “autogens” -- a term Nakazawa coins to denote chemical, lifestyle, and other triggers of autoimmune disease -- are wreaking havoc with the human immune system. She offers a clear course for hope, detailing the personal, political, and economic choices that can help curb this epidemic before it is too late.

THE AUTOIMMUNE EPIDEMIC combines up-to-the-minute research emerging out of dozens of today’s cutting-edge scientific labs with the frontline perspective of autoimmune sufferers. Nakazawa explores vital topics including:

* What role chemicals, heavy metals, viruses, diet, stress, lifestyle and genes play in developing autoimmune disease
* How our modern lifestyles and environmental contamination have created a “perfect storm” -- the ripest possible conditions for today’s autoimmune epidemic to take hold
* The connection between autoimmune disease and allergies, the rates of which are likewise skyrocketing
* The disturbing fact that 75% of autoimmune sufferers are women -- and one in nine women will be afflicted with these diseases
* The connection between autoimmune disease and Fibromyalgia and Chronic Fatigue
* The fact that the average American woman is eight times more likely to have autoimmune disease than breast cancer
* How industrial byproducts interface with the immune systems of our bodies on a cellular level, sabotaging an extraordinarily fine-tuned blueprint for healthy cellular communication
* Ways in which readers can lessen the multitude of exposures that threaten their immune systems and their overall health
* The groundbreaking interventions from today’s top labs -- from Harvard to Hopkins -- that promise to help halt the disease process

As Nakazawa’s personal accounts show, anyone is susceptible to autoimmune disease—from an athletic doctor in her 40s to an entire neighborhood of teenage girls to small children. However, surveys reveal that nine out of ten people cannot specifically name an autoimmune disease. More disturbingly, many general practitioners lack in-depth knowledge of these diseases and their diagnoses, and the average autoimmune disease patient sees six doctors—over an average of four years—before being diagnosed and treated correctly.

THE AUTOIMMUNE EPIDEMIC calls for a halt in the proliferation of these debilitating, and often fatal, diseases—and provides the knowledge and the means to make a difference.

Being part of an extended family rife with autoimmune disorders, this book was very informative. The only caveats that I have are that the author occasionally draws parallels between anthropocentric global warming and other environmental degradation, and that she recommends rice as part of an autoimmune diet.

That being said, the book is a very comprehensive look at autoimmune disease, giving an overview of the present state of knowledge in the medical community, the relationship between environmental and genetic triggers, ongoing research, and strategies for prevention or amelioration of extant symptoms. She coins the term 'autogen', modeled on 'carcinogen', as a group of biological/chemical agents known to initiate or exacerbate autoimmune diseases. Interesting statistics include: susceptibility to autoimmune diseases is generally 30% genetic and 70% environmental; 25% of Americans are genetically susceptible on an individual basis (before the inclusion of environmental factors); and the fact that women are much more likely to experience autoimmune disease than men (with 1 in 9 American women experiencing some form of autoimmune disorder, a rate much higher than cancer).

The mechanism of autoimmune disfunction is also explained in a straightforward way. One good example is the connection between Epstein-Barr virus and lupus, where the virus mimics a specific protein in the human body which the immune system fails to distinguish the difference between; the body then proceeds to attack all cells which contain this protein along with the virus, resulting in the subsequent disease.

The discussion of chemical autogens is a very good supplement to Sherry Rogers' Detox or Die, overlapping in many places but in this case explaining specifically how these pollutants tie in to various autoimmune diseases. A discussion at the end of the book details lifestyle and dietary choices which can optimize the immune system and, with the exception of some specific details (such as the inclusion of rice -- the author generally steers the reader away from gluten), mirrors advice already given here.

Finally, here's a fun website excerpted from the book -- if you live in the US, type in your zip code and it will tell you what potential environmental hazards are located close to your neighborhood (I discovered that there are five different lead-disposal sites in mine):

http://www.epa.gov/enviro/emef

 

[Piotrek]

http://www.epa.gov/enviro/emef

The above link will re-direct to here: http://www.epa.gov/emefdata/em4ef.home

Thanks Shijing!

 

[JGeropoulas]

That looks like a very timely and helpful book.

After I began overseeing my 85-year-old mother's health in 2008, I was surprised to learn these facts:

* 23.5 million Americans suffer from autoimmune diseases. (_http://www.alternet.org/health/80129)

* 30 diseases have been determined (and 20 others suspected) to be linked to autoimmune processes
( _http://en.wikipedia.org/wiki/Autoimmune_disease)

* Autoimmune disease rate are dramatically increasing. For example:

autoimmune illnesses, chronic allergies and other conditions are rising at alarming rates. According to the CDC, asthma has increased 52% in persons between the ages of 5 and 34, and rates of death due to asthma have risen 42% in the period between 1982 and 1992. A more recent study by the CDC indicates that asthma has doubled during the last 20 years and is now the most common disorder in children and adolescents.
(_http://www.thenhf.com/article.php?id=1758)

Other than the general mention of chemicals and heavy metals, I noticed that the book summary doesn't mention the insidious role that vaccines play. Does the book get into that? If not, that would be most interesting considering the following:

Autoimmune disease is conceived not to be an exaggerated response to foreign matter. But it is thought that this syndrome occurs when foreign chemicals modify tissues or immune cells, affecting the regulation of immune response such as the production of antibodies and inflammatory response. The result is an immune response against our own tissues, tissue damage and disease. Mercury and other compounds can induce this response by the immune system. Systemic lupus and rheumatoid arthritis are two autoimmune diseases.

Generally the way vaccines work is that they contain a virus and substances called ‘adjuvants’ and preservatives (like mercury and aluminum) that kick the immune system into overdrive so that they go on the hunt for the viruses, eat ‘um up, and create antibodies against further infection. Unfortunately the immune system goes haywire and attacks what ever is in sight. The result can be an autoimmune disorder. When the immune system attacks the pancreas you have Type 1 Diabetes

…vaccines should not be given to individuals with impaired immunity for fear of triggering immune attacks on the central nervous system, such a encephalitis, nerve injuries (peripheral neuropathy), multiple sclerosis, and allergic encephalomyelitis. All of these are considered autoimmune disorders, during which the immune system attacks specific components of the brain and spinal cord by mistake.

Dr. Mark Sircus
“The Rivers Of Life”
http://www.cassiopaea.org/forum/index.php?topic=7765.msg85089#msg85089

…its the squalene that explodes an auto-immune response, shown on the labels as MF59…after just one shot, your white blood cells start attacking your own tissue or in other words, a full-blown auto-immune response

Dr. True Ott
_www.radioliberty.com

There is plenty of evidence to suggest that over stimulation of the systemic immune system as by repeated inoculations spaced close together, can result in chronic activation of brain microglia, the nervous system’s immune mechanism.

Dr. Russell Baylock
The Blaylock Wellness Report Vol 1, Issue 1
_http://www.thenhf.com/article.php?id=1758

vaccines could be disabling our body's ability to react normally to disease, and creating the climate for autoimmune self-destruction. The many reports of autoimmune phenomena that occur as reactions to vaccination provide incontrovertible proof that tampering with the immune system causes devastating disease.

Even the (Federal) Vaccine Safety Committee acknowledged the onset of several autoimmune diseases as a result of vaccination (Guillain-Barre syndrome, following tetanus and polio vaccines; thrombocytopenia, following MMR; chronic arthritis following rubella).

These types of symptoms have occurred following every vaccine routinely given to children--the suppressed immune system begins to attack the body's own cells, usually the nerves and joints…These autoimmune responses to vaccines have resulted in permanent, chronic disease conditions--deforming arthritis and muscle wasting and paralysis.

Though anecdotal data is never conclusive, it certainly can be convincing:

My father smoked cigarettes and drank pretty heavy for 20 years, never exercised, and ate the same things he ate growing up poor on a farm (e.g. butter, bacon, sardines). My mother, never smoked cigarettes or drank much, exercised regularly, and modified her diet according to "modern wisdom" (e.g. margarine, no bacon, no sardines).

My father never got a flu shot. My mother always got a flu shot.

My father never got sick or contracted any diseases. My mother has had skin cancer, fibromyalgia, rheumatoid arthritis, osteoporosis, hypertension, elevated cholesterol, diabetes, and breast cancer.

Fortunately, I have gotten her to discontinue some pharmaceuticals and begin taking supplements and eliminating some unhealthy foods which has made a noticeable difference.
Unfortunately, she forgot all my lectures about flu shots, and submitted to someone hawking them at the drug store!

 

[shijing]

Other than the general mention of chemicals and heavy metals, I noticed that the book summary doesn't mention the insidious role that vaccines play. Does the book get into that?

Actually, the book does go into vaccines (there's a section devoted to them) and Jackson Nakazawa is very critical of them. Thanks for the additional info, though, as it's in line with everything else I've read. I'm sorry to hear your mom has been through so much -- it sounds like she's been hit pretty hard; my dad suffers from fibromyalgia as well, among other things, and he also gets his flu shot religiously :(

 

[Gaby]

After I began overseeing my 85-year-old mother's health in 2008, I was surprised to learn these facts:

* 23.5 million Americans suffer from autoimmune diseases. (_http://www.alternet.org/health/80129)

According to Stephen Edelson, author of "What Your Doctor May Not Tell You About Autoimmune Disorders", it is actually over 50 million Americans. That is more than the double that they will admit!

Anyhow, I happen to have some scanned quotes of "The Autoimmune Epidemic" by Donna Jackson Nakazawa

INTRODUCTION

This book is about a global health epidemic that threatens to i affect each and every one of us. However, the seeds for this book were sown in my own health crisis. Like 23.5 million other Americans, I suffer from autoimmune disease, and it has ravaged my life, placing before me the greatest obstacles I have ever known. Pages of this book were written during different stays in the small white hospital rooms of Johns Hopkins Hospital, and many chap¬ters were drafted during long bedridden months at home.

The greatest of these challenges began one fine spring after-noon as I was celebrating "Carpet Day" with my daughter. Carpet Day is our own personal mother-child holiday, celebrated only by us. On the first great spring day we take an old carpet and unroll it on our suburban drive. We bring pillows, chalk, snacks, and lem-onade and lie there, reading and chatting, pretending it's the beach for a whole afternoon. On Carpet Day, you can almost hear the seagulls and feel the breeze from the ocean waves that we still won't visit for months. That day, we brought our golden retriever puppy outside with us. He saw a squirrel, and off he went. I bounded after him, or tried to, only to find that my left leg wouldn't follow my right. I hurtled headlong into the grass.

Over the next seventy-two hours, my left leg, then my right, then both arms lost all muscle control as my body underwent what was—for me—the all-too-familiar creeping paralysis of Guillain-Barre syndrome, an autoimmune illness in which the nerve's myelin sheaths are destroyed by the body's own immune system.

Guillain-Barre syndrome, or GBS, usually attacks a month or so after a patient has had a common viral or bacterial infection. Just three weeks earlier, I had had a stomach bug. My body's im-mune fighter cells had mounted a war to eliminate those germs, but once they'd achieved that goal, instead of ceasing their attack they turned on my own body—in a deadly game of self-sabotage. With Guillain-Barre, the immune system gets its wires dangerously crossed and while trying to fight off the infectious agent also dam¬ages the myelin sheaths that wrap around all of our nerves like a protective insulation. The damage is so rapid that a patient's my¬elin sheaths and the axonal nerves they protect can be methodically and painfully stripped away—leaving them entirely paralyzed within weeks, or even days.
It was the second time in four years that I had been paralyzed with GBS. Once before, in the spring of 2001, when my son was six and my daughter two, I had developed this same bizarre and dev¬astating disease after a stomach bug. In 2001, physicians at the local emergency room confidently misdiagnosed my leg weakness and back pain as a back injury and prescribed bed rest. But instead of improving with rest, I lost nerve and muscle control in my legs by steady degrees over a period of nearly two weeks. One day I could stand on my toes, a few days later I couldn't quite manage it. A few days after that I couldn't flex my feet. A week later, I would stand up and try not to crash into the wall, but suddenly the wall would be there to greet me.

A day or two later, I attempted to get to my two-year-old after she bloodied her toe by stubbing it on the leg of my dresser, but I couldn't make it there, even on my knees. The communiques my brain sent to my body to feel the floor beneath my feet simply didn't connect.

One afternoon my son, then six, tried to rouse me by showing me how competent he'd become overnight at tying his shoes, as if by some magical power he could banish his mom's bizarre inability to budge from bed.

"Look, Mom!" he called to me from downstairs, near the front door where we kept our shoes. "I tied my shoes! On my own!" There was a moment's pause, and then—making a decision to ignore the no-shoes-in-the-house rule—he clambered up the stairs to show me his handiwork, pride widening his smile.

"Great job, buddy." I tousled his hair and smiled back, ignor¬ing the sneaker prints trailing behind him across the bedroom rug.
"Mom?" he asked, his tone uncertain. "Can you help me tighten the loops?" He put his foot up on the side of the bed. I tried to pull at both laces to make the floppy loops smaller but my fin¬gers weren't strong enough.

"I can't manage it at the moment, buddy," I said. His face grew ashen and tight. I tried to comfort him, repeating a made-up acronym I sometimes used to soothe my children, hoping it would do the trick again. "Remember? My love for you is very FINE—it is Forever, Infinite, Neverending, and Everywhere you go." We lay side by side, my words all I had to embrace him with as I struggled to hide my own panic. Why was I losing muscle control in my arms as well as my legs?

Within twenty-four hours, my breathing became shallow and short. It was clear I was facing something other than a back prob-lem. I was admitted to Hopkins, where the neurologist who took my case ordered infusions of immunoglobulin, or other people's healthy immune cells, the standard treatment for GBS. In many first-time cases, but not all, GBS paralysis is 90-percent reversible with treatment, and the myelin sheaths begin to regenerate. It is a remarkable process. If left untreated, GBS can be fatal; the paraly-sis spreads to the lungs, and patients require intubation—a tube inserted into the airway to prevent them from suffocating to death. In 2001, I recovered well with immunoglobulin treatments fol¬lowed by months of physical therapy. Although I was left with strange neurological bells and whistles—jingly nerve endings, tired, locked muscles, twitchy connections—it seemed a minuscule price to pay for being able to walk unassisted again.
I was so very fortunate.

Still, other problems emerged. I was told that I also had leuco¬penia, a dangerously low white blood cell count. Leucopenia and GBS came on the heels of two earlier autoimmune diagnoses that had spanned the previous fifteen years. Small-fiber sensory neu¬ropathy, which leads to a permanent loss of some of the normal sensation in the hands and feet, and hypothyroidism, or an under-active thyroid. In addition, I suffered from vasovagal syncope, a fainting and seizure disorder caused by the heart sending incorrect signals from the brain to the vagus nerve and failing to pump enough blood through the body, "cured" by doctors surgically im¬planting a pacemaker when I was twenty-eight.
Still, when Guillain-Barre struck a second time in April 2005, it came as a devastating shock. You simply were not supposed to get GBS twice. If you did, your chances of regenerating your nerves went from 90 percent to—well, no one quite knew. Toward the end of my hospital stay in the rehabilitation center, my physical medi¬cine specialist stood at my bedside one day, patting my leg. "You might not get any better than you are right now," she warned, her voice soft for the blow. "But that doesn't mean you should give up hope."

I had no intention of giving up hope. As a child, I had watched my father suffer through a constellation of what I have since learned were autoimmune illnesses: inflammatory bowel disease, rheuma¬toid arthritis, and leucopenia. By the time my father was forty-two years old, he could barely walk a step without wincing with joint pain, and his bowels were continually inflamed. He died without warning one August morning following routine abdominal surgery to remove inflamed parts of his duodenum. I was twelve. It turned out that the heavy steroids his rheumatologist had prescribed for his arthritis had eaten through the sutures his stomach surgeon had sewn in, and the peritonitis that ensued caused his body to go into shock and his heart to arrest. "Normal courses of antibiotics proved unsuccessful," read his death report.
We knew so little then. Still, thirty years later, when my own frightening journey through autoimmune disease began, it seemed to me that we knew little more than we had in my father's era.

As I lay on that hospital bed with Guillain-Barre for a second time in 2005, I couldn't help but compare my father's odyssey to my own. Like him, it seemed I possessed an irrationally overexu¬berant immune system. I lay in a hospital bed in the same medical institution, Johns Hopkins, one ward over from where my father had died from autoimmune-related complications at almost the very same age I was now. With a young son and daughter at home yet to raise, the similarities terrified me.

Back home, physical therapy, meditation, and an autoimmune-preventive diet all helped to bring incremental gains in mobility. I would later come to think of that time as a five-month journey around my room, often accompanied by my physical therapist at my side, as I sweated to graduate from wheelchair to walker to cane—with no guarantee that I would improve. As one doctor ex-plained, "You've had several forest fires, and each time it's harder and harder to get healthy regrowth." It was the second time in four years that my work as a journalist came to a sudden halt. Deadline after deadline passed. I was simply too weak to sit in front of a computer, let alone tap out words on the keyboard. I tried to get to the bathroom one night on my own, using my walker, without waking my husband to help steady me, but misjudged my stamina. On the way back I crashed into a window and fell in a heap on the floor, unable to get up on so much as one elbow. When you hear the phrase "and he scraped her up off the floor" and wonder what that really means, it means exactly what my husband did that night. He sat up and called my name out in confusion: where were my cries coming from? When he found me beneath the window he picked me up and laid me back in bed. We lay side by side, both too close to tears to risk words.

A few moments later, our son, ten then, crept silently into our room, having heard the commotion. He laid his head down in the dark beside me, his arm circling my waist from behind.

"Mom?" he said, his voice questioning, as he grasped my hand. I tried to hide my wet eyes and clear my voice.

He pressed his face into the back of my neck, quietly, tenta-tively. "Mom?" he asked. "Don't you know that I'm old enough to know that even grown-ups can get scared?" Then he hesitated. "The only time I get really scared is when it gets all quiet at school," he said, his fingers tapping the ends of mine, one at a time, gently, rhythmically. "Like when we're about to take a test, and the only thing I can hear is the rustling of paper. And then I worry . . . what if you die before I get back home to see you again?"

My children had spent three-quarters of a year of their young lives with their mom either in the hospital or bedridden.
Scared? We were all terrified. Autoimmune diseases, which often strike when people are in their prime—making them wonder whether they'll ever be lucky enough to get back on their feet again—tend to have that effect. Like any family in which one mem¬ber is felled with autoimmune disease, my husband, son, and daughter had been through hell as much as I had.

By the end of July, I got up and down the stairs with a cane for the first time. In August, four months after being discharged from the hospital, I was able to make it with a cane all the way to the mailbox—a few yards down the sloped driveway on which we'd celebrated Carpet Day that April. It was a tremendous milestone, one I had been warned I might never reach. One day my in-home physical therapist and I headed out the door to test my stability walking across the bumpy grass in our wooded backyard. When I'd managed to go twenty or thirty feet he whisked the cane away. In September, my feet were strong enough to drive, and I drove my children to school for my daughter's first day of first grade and my son's entry into middle school.

A few months later, in December, my six-year-old daughter asked me to dance with her in the kitchen to a funny song we'd danced to together for years—about a cow, funnily enough, who wouldn't listen to anyone who told her what she couldn't do.
"Can you dance, Mommy?" she asked.

"Let's see," I said, curious myself. We cranked the music, held hands, and stomped our feet and turned in circles as we shouted out the refrain, "No one can tell you who you oughta be or what you oughta do!" until we began to laugh with a raucous joy that morphed into tears, before we fell spent on the floor. The relief on my daughter's face was akin to that of Christmas morning—Santa did come!

Still, my doctors could not guarantee that I would not plunge into more devastating autoimmune crises. As one told me, "All we can do is wait and see until another shoe drops—then treat you as best we can." Sometimes, the shoe does drop—and hard. In the spring of 2006, I caught a seemingly innocuous, low-grade gastro¬intestinal infection that would not go away. Six weeks later I landed in the hospital to treat a bowel neurological dysfunction—a com¬plication that arises in some who have had Guillain-Barre syn¬drome.

Because I am a journalist by trade, it was in some ways inevitable that my personal journey into autoimmunity would turn into a pro¬fessional quest. I wanted to know what was being done to investi¬gate autoimmune disease. Why didn't we as a society hear more about these illnesses—both the problems they cause and research under way to combat them? What factors coalesced to cause auto-immune disease? Did environmental components play a role—and if so, what were they? What could a patient do to stem the damage and prevent future crises? Driven by an urgent need for informa¬tion, I sought out answers from the top researchers in the field.

It quickly became clear in talking to these cutting-edge scien-tists, however, that the story was far bigger: my own case was but one tiny part of an emerging, global health crisis—one with dis-turbing and widespread implications for every American. During the same years that I have been waging my own battle with autoim-munity, researchers at dozens of top international institutions around the world have been documenting an alarming rise in auto-immune disease rates. In 2005, the National Institutes of Health (NIH) released a report called Progress in Autoimmune Diseases Research in which the director of NIH pronounced that nearly one hundred known autoimmune diseases—such as multiple sclerosis, type 1 diabetes, rheumatoid arthritis, myositis, lupus, scleroderma, thyroiditis, Graves' disease, ulcerative colitis, Crohn's disease, my-asthenia gravis, and eighty-some others—now afflict 23.5 million people in the U.S., or one in twelve Americans, and these diseases are now on the rise worldwide—for reasons unknown. The statis-tics are stark: over the past forty years, rates of lupus, multiple sclerosis, type 1 diabetes, and a range of other autoimmune dis-eases have doubled and tripled in Western countries around the world. Just as worrisome, rates are rising dramatically among chil-dren, as are other related syndromes in which the immune system becomes hypersensitive, such as food allergies and asthma. These growing numbers cannot be attributed to better diagnostic proce-dures or disease awareness alone. An escalating number of people in the industrialized world are facing diseases in which their im-mune systems are turning on and damaging their own bodies.

What is propelling this epidemic? Scientists the world over agree that the root cause of this frightening trend is environmental. Twin studies elucidate that two-thirds of the risk of developing autoimmune disease is acquired through some environmental trig-ger, genetic risk being the smaller part of the equation. Over the past decade, l b around the globe have proven definitive links be-tween a list of commonly used industrial-age chemicals, heavy met-als, and toxins and the development of numerous autoimmune diseases. As hundreds of industrial byproducts interact with the immune cells of our bodies, they are sabotaging an extraordinarily complex and fine-tuned blueprint for healthy cellular communica-tion . Facing a dismal picture in which the numbers of people af¬flicted with autoimmune disease in industrialized countries continue to rise, the race to turn the tide of this worldwide trend has become a race against time.

This book explores this scientific race—the watershed discov¬eries that are revolutionizing our understanding of the way the im¬mune system functions and the complex, interlocking factors that cause it to go haywire; what role genes and environmental toxins play in who will be struck by disease; why scientists now believe that even people who are not genetically predisposed to autoim¬munity may fall ill with these diseases; the groundbreaking inter¬ventions emerging out of today's top labs that promise to help halt the disease process; and ways in which we can each lessen the mul¬titude of exposures that threaten our immune systems and our health.

Four decades ago, writer Rachel Carson, author of Silent Spring, demonstrated how our chemical age has altered our environment to the degree that the fertility and survival of many of the species with which we coexist are threatened. Then, as now, there is great resistance to the idea that environmental contamination can alter the health of both animals and people. Indeed, it has taken several decades for many researchers in the autoimmune-disease field to come to the conclusion that our contaminated environment is caus¬ing the human immune system to run amok. But the consensus is rapidly building. These pages lay bare this "inconvenient truth"—one as disturbing to today's top scientists as global warming. My hope is that the chapters you are about to read will awaken a deep understanding about how the environmental changes of the indus¬trial age and our twenty-first-century lifestyles- are wreaking havoc with the immune cells of our own bodies.

We are our environment. What we put into it, we also put into ourselves. What we do to it, we also do to ourselves. The way in which our bodies are turning against themselves when autoimmune disease strikes serves, sadly, as a disturbing modern analogy for what we are doing to ourselves as a society as we continue to dump thousands of chemicals into the soil, water, and air that surround us. Our mass dependence on chemically manufactured home and lifestyle products and our diet of chemically processed foods, in many ways, constitute a great societal health experiment, as we continue to surround ourselves with thousands of chemicals whose properties we do not yet fully understand.

With our eyes open to that knowledge we can begin to make critical and profound choices, embarking on a journey of small steps that will slowly start to make all the difference between health and disease. As we educate ourselves about the consequences of our day-to-day lifestyles and strive to make the personal, political, and economic choices to counter those ill effects, we will be taking back our environment, our bodies, and our future.

 

[Gaby]

CHAPTER ONE
THE RED FLAG DISEASE

Between them, Jan Pankey and David Calhoun shared four decades of experience as physicians. Yet in the quiet dark
of one August night in 2003, all that experience seemed to count for nothing. Something was going terribly wrong inside Jan's body, and neither husband nor wife could make sense of what was hap¬pening, or why.

It was shortly after midnight on the first night of a long-anticipated vacation in Montana when Jan awoke to a burning ache that encircled her upper chest. It was all she could do to draw in a breath. If Jan hadn't known better she might have thought she'd been pummeled with an iron rod across both front and back while she slept. Fumbling in the pitch black of their Idaho hotel room, where they had stopped en route to their final destination, Jan switched on the bedside lamp and stood for a moment in the circle of reassuring yellow light. Her legs felt unsteady. She couldn't feel the carpet beneath the soles of her feet. It took a blink or two for her mind to register that she was about to faint.
A minute later Jan came around to find herself staring at the coarse hotel rug, struggling to take in a full breath—trying to piece together where she was and why her upper body was in so much pain. In that split second every nerve ending inside Jan Pankey's body stood on full alert, signaling that something ungodly was happening. She crawled to the bed to wake her hus-band.

David quickly shook off sleep along with his bewilderment as to why his wife of twenty-eight years suddenly was writhing un-controllably beside him—in a hotel room a thousand miles from home and an hour from the nearest metropolitan hospital. Together they struggled to diagnose. Jan and David were well versed in the medical school mantra "When you hear hoofbeats, think horses, not zebras," and so they stuck to Jan's prior, known medical his¬tory rather than coming up with exotic could-be's. Recently, Jan, who was forty-nine, had started taking birth-control pills to help even out hormonal fluctuations and irregular periods. But that seemed of little consequence here. She'd also been plagued by bouts of indigestion, which her doctor had chalked up to gastritis, a chronic inflammation of the stomach and intestinal tract, due to a fairly common condition known as gastroesophageal reflux dis¬ease, or GERD. In GERD, the stomach overproduces gastric acid and the esophagus spasms, causing excess acid to rise into the frag¬ile lining of the throat. It can be quite painful.

Jan and David concurred that Jan must be experiencing spasms in her esophagus due to her GI problems. David felt that Jan's asthma must be acting up, too; recent forest fires had plagued Montana's wooded areas and some neighborhoods, and the nox¬ious smoke clouds had grown closer and more visible as the couple had neared the Idaho-Montana border. Still, severe chest pain was not usually indicative of asthma. Could asthma coupled with esophageal spasms produce so much pain? That was their best edu¬cated guess at one o'clock in the morning in the middle of no¬where.

Jan and David had left home early the day before with the goal of cycling more than a hundred miles of Montana's Glacier National Park, an expedition they had spent the past year plan-ning. Jan had been feeling well enough—you'd certainly never know that she suffered from any health issues to look at her. Slim and vitally active in the middle of life, she had already biked more than 3,300 miles in the previous twelve months. She held down a demanding professional schedule, commuting by plane from rural New Mexico to downtown Oakland, California, every two weeks to work long hours as a pediatric and neonatal anesthesiologist at Oakland's Children's Hospital. She was also a regular team mem-ber on physician-run medical missions overseas, helping children in third-world countries obtain lifesaving operations they might never otherwise receive.

The first night after departing for their big Montana trip—fourteen hours in the car after they'd left behind the rural farming village where they lived near New Mexico's Rio Grande—the cou-ple had stopped at their Idaho motel just shy of the Montana bor¬der. Once settled in their room Jan and David had turned on the air-conditioning to help filter out the polluted soot from the smok¬ing Montana fires that had drifted in behind them and hoped for a good night's rest. It was a few hours later that Jan's chest pain sud¬denly and inexplicably set in.
Then, just as unexpectedly, a few hours before dawn, the wrenching pain began to lift. Jan could take in a deep breath again. She told David she was feeling some relief. David felt reassured by Jan's slowly returning calm. He would later realize that it was a veneer Jan had perfected all too well after decades of reassuring parents with critically ill infants and soothing children who were about to undergo surgery.
That morning they crossed the border into southern Montana, where ash from the fires hung so thick in the air that you couldn't see across the street. Neighborhoods were being evacuated. As they got out of their Legacy station wagon to stretch their legs and sur¬vey the situation, Jan was seized again by debilitating chest pain and shortness of breath. She dropped to a crouch, gasping for air, unable to stand up.

Half an hour later David was wheeling Jan into the local hospital in Missoula. The emergency-room doctor reassured them that Jan's X-rays looked fine, except for a small, barely distinguishable anom¬aly: a slight shading along the lungs above the left half of her diaphragm, deemed insignificant. The doctor surmised that Jan's discomfort—and she was now twisting in pain on the hospital gur¬ney—might be a kidney stone. Urinalysis ruled that out. Nor was Jan displaying signs of wheezing. The ER doctor, stumped, con¬cluded that Jan and David's initial hunch had to be right: Jan was suffering from severe spasms in her esophagus due to her gastro¬esophageal reflux disease. In addition to the spasms themselves, Jan was experiencing muscle strain caused by the spasms along her chest wall. Or so the doctor thought.

The ER physician ordered an intravenous drip to be inserted in Jan's right forearm and dosed her with Demerol for pain as well as a sedative to help her relax. Afterward, Jan was given Prilosec for her gastritis and reflux, and was released. She felt she could and should go on with the trip.

Jan explained her feelings to David. "We've paid the money," she told him. "And I don't want to waste an opportunity we've been looking forward to all year because of stomach problems." Beneath her words David heard Jan's characteristic determination not to be a "wimp."
By the time the bike tour began later that afternoon, Jan wasn't so game, and she stayed behind at the hotel. But when the riders headed out again the next morning, she was resolute: she would ride the "sag wagon"—for lagging bikers—up the mountain a thousand feet, then coast down on her bike so that she could see the stunning vistas of glacier and rock she had driven so far to view. She was a veteran biker; what in the world could happen to her as she coasted down a mountain road? She donned her bike jersey, choosing one that would turn out to be all too fitting. Her jersey material was dotted with small red blood cells and sported the logo of the whimsical company that had made it, the Republic of Anaerobia—literally meaning "the .state of insufficient oxygen." Beneath the logo were the words Veni Vidi Vomiti. A twist on Julius Caesar's "Veni, vidi, vici" ("I came, I saw, I conquered"), Veni, vidi, vomiti was a hardcore no-sissy bike-til-you-drop insiders' joke: "I came, I saw, I vomited."

Jan began her glide down the mountain only to find that smog drifting from the fires nearly obliterated the view of the icy gorges and glaciered valleys. But that would turn out to be the least of Jan's worries. She had coasted another half mile in her red jersey when the now familiar vise of pain returned with a vengeance, nearly jolting her from her seat. She found it hard to pull in a breath. The scenery grew blurry. Colors turned to shades of black and white. She was close to passing out.

David discovered Jan crouched by her hike alongside the nar¬row mountain pass. All they could think of was getting back to the Albuquerque, New Mexico, medical center near their home where David was on staff, as fast as he could drive them.

Meanwhile, neither of them had a clue that in their empty pink adobe house near the Rio Grande the phone was ringing over and over again as the Missoula hospital's radiologist—who had fi¬nally reviewed Jan's X-rays—tried in vain to locate the couple.

They were halfway home—still assuming the pain was due to a wicked combination of reflux and gastritis—when Jan noticed a new problem. A hot, angry red line was moving up the vein in her right arm from where her IV needle had been. As a physician she knew a blood clot on sight. She knew that if it progressed it could easily block the flow of oxygen to her heart or lungs, causing a heart attack or even a life-threatening heart infection known as endocarditis. Jan took a dose of the antibiotics that she and David always carried in their first aid kit when traveling, and they stopped at a pharmacy for a heating pad to wrap around her arm to help disperse the clot—both standard protocol. They passed a road sign pointing to a local hospital along the deserted highway. David looked at Jan questioningly.

She shook her head no. "I want to get home to medical care I know we can count on," she told him. With Jan's eyes locked on the crimson line to make sure it wasn't progressing, they headed home.

Eight hours later Jan Pankey lay prone on a gurney inside the Albuquerque Regional Medical Center ER in severe pain, breath¬ing through an oxygen mask while a technician performed a scan of her chest. Jan watched from across the X-ray room as the picture of her lungs began to register on the machine. She didn't have her glasses on, but even so she could see the clots as they appeared on the scan. The technician stared at the screen in stunned silence, then turned to Jan and said, "Honey, I don't think you're going anywhere tonight."

The X-ray was startling. It looked as if someone had taken inch-sized bites out of several areas of each lung. Blood clots, or pulmonary emboli, had proliferated out of nowhere. Large clots were blocking several large arteries. Three of the five lobes in Jan's lungs weren't getting any blood at all, while the other two had been damaged by smaller clots. Together, clots had cut off 50 percent of the oxygen flow to Jan's lungs. The state of anaerobia indeed. It was a wonder Jan was still alive.

The ER physician on call later explained to Jan and David that the area above Jan's diaphragm that had appeared tinted in that first Missoula X-ray had been, no doubt, the first lung tissue to be injured.

The red line on Jan's arm hadn't progressed, so clearly the clots weren't originating from there. Additional ultrasounds re-vealed, however, that Jan's entire right leg vein was blocked from ankle to groin with a huge clot known as a deep vein thrombosis, or DVT. It was from this larger clot that smaller ones were travel-ing up to block the major arteries of her lungs. From torso to toes, Jan's blood was clotting up like sludge and no one could explain why.

Without knowing exactly what was causing Jan's condition, the ER physicians put her on the blood thinner Coumadin with the understanding that she would need to stay on it for several months to avert further crises. She stayed six days in the hospital before being discharged. But the second day home it didn't seem to matter that she was taking the full recommended dose of anticoagulants. Jan bent over to pick up a leaf that had fallen from a neglected plant in their foyer and felt "a hard thunk" in her chest that nearly toppled her. She called 911 and David, who was fifteen minutes away at work. The twenty-minute ride alone to the hospital in the back of the ambulance was terrifying.

"Even though I was wearing an oxygen mask I was gasping for every breath," Jan recalls. When David met the ambulance crew
at the hospital, they confirmed what he already feared. Jan's situa-tion was deteriorating.

The hospital was so full that day that they turned a U-shaped, curtained area of the emergency room into a temporary critical care unit to treat Jan. Kwaku Osafo-Mensah, a young lung special¬ist from Ghana who'd come to Albuquerque five years earlier after medical training at UCLA and Stanford, was rushed in to consult on Jan's case. Drawing the beige hospital curtains closed around her makeshift room in the busy ER, Osafo-Mensah quickly ex¬plained to Jan and David that even though Jan had been on blood thinners, X-rays showed that she had lost two more areas of lung.

Her EKG had as many spikes and valleys as the Swiss Alps. Jan and David were terrified.
It was as if someone had punched a hidden self-destruct button inside Jan's lungs and there was no shutoff switch to be found. She knew that if they couldn't stop the clots from forming, she would lose all the pathways by which oxygen entered her bloodstream. What was unfolding inside her body was petrifying; it was as if she were being suffocated to death by her own blood cells.

Osafo-Mensah shook his head as he talked to his new patient, trying to nudge the pieces together. Jan's first embolisms had devel¬oped during a long, two-day car ride to Montana. And she was often sitting on airplanes commuting from New Mexico to Oak¬land. Perhaps both sedentary activities had led to exacerbated clot¬ting. On top of that, anesthesiology is a pretty sedentary job, he explained to Jan. Still, it didn't add up. Not for someone like Jan Pankey who biked 150 miles a week.

Regardless of the diagnosis, Osafo-Mensah knew what he had to do if he was going to save Jan's life, and he knew there wasn't much time. He decided to immediately place a filter in the vein at the top of Jan's leg, known as the inferior vena cava, which pumps blood up from the lower two-thirds of the body. The filter would Stop any clots before they traveled up to Jan's heart or lungs. That, along with an intravenous infusion of the blood thinner heparin, would prevent more clots from rising toward her lungs.

It worked. Jan went home again. But a disquieting mystery still lingered in the air. Why weren't blood thinners working for Jan as they did for other patients? Jan scheduled an appointment with her local internist and posed the question to her, only to be brushed off with the words, "Well now, that's chasing a real zebra." Jan never went to her again.

Still, the insertion of the blood filter had made some difference for Jan; she was no longer living in a state of full-out perpetual crisis. The clots blocking the pathway to her arteries had dispersed, allowing oxygen to flow into her lungs again—except for the small percent of lung tissue that had died. Nevertheless, she felt so wiped out that she couldn't walk down a hall without pausing to catch her breath. Stairs were out of the question. Twelve hours of sleep did nothing to relieve her weariness. Many days, it was all she could manage to get out of her bathrobe and make a cup of tea by noon.

Despite the residual severe fatigue, weakness, and shortness of breath, she managed to attend a medical conference six weeks later.
At the conference, as serendipity would have it, Jan met a dynamic young physician by the name of Alex Spyropoulos, whose passion
was deciphering unusual clotting disorders. As the medical director and founder of the Clinical Thrombosis Center at Lovelace Sandia Health Systems in Albuquerque, Spyropoulos was presenting his research on designing new ways to use blood-thinning drugs. He also happened to be the author of a case report in a medical journal on a newly emerging autoimmune disease that dangerously altered clotting factors.

Reeling from what she calls a kind of "mortal exhaustion," Jan approached Dr. Spyropoulos after his hour-long lecture and put forth the question, "How could an active woman like me have recurring clotting even on blood thinners? What's happening to me?"

Two weeks later, Jan sat on an examining table inside Alex Spyro-poulos's office, relaying to him a medical history that had stumped half a dozen physicians. In addition to all that she had been through physically, she told him, she'd also been experiencing some cogni-tive problems—a kind of recurring brain fuzziness and forgetful-ness that deeply concerned her. Hearing this, Spyropoulos looked up over his notes at Jan, one thick, black brow furrowed. It was his dedication to tough cases that had earned Alex the nickname of "Dr. Spy" among patients who were grateful for his detective-like zeal on their behalf. He had a hunch, he told Jan, that she was not yet on a high-enough dose of anticoagulants. Rather than worry her by playing out possibilities, he ordered extensive blood work and, for added insurance, wrote her a prescription on the spot, upping her dose of medication. "If you have what I think you have, the anticoagulants you're taking will not be sufficient to do the job," he told her, ripping the script off the pad and handing it to Jan.

One week later, Dr. Spyropoulos received Jan's blood work and found his earlier suspicions confirmed. He immediately called Jan's office at Oakland's Children's Hospital where she was work-ing late. It was well into the evening and most of the hospital office lights were out. Jan still remembers hearing her line ring and rush-ing in to pick it up.

"I think I know what you have, Jan," Dr. Spyropoulos told her, excitement accelerating his delivery. Spyropoulos had already treated a number of patients with mysterious clotting problems who'd also reported the onset of "brain fog" as a debilitating symp¬tom. When Jan's blood work hit his desk, so did Alex's eureka mo¬ment. Jan's blood showed the precise biomarkers for an autoimmune disease known as antiphospholipid antibody syndrome, or APS, an illness he'd seen too often of late in other thrombotic patients.

"I had no idea what he was talking about," Jan recalls. "I had never even heard of APS." She fumbled for pen and paper in her darkened office. The three other doctors who shared her workspace had already gone home, and the hospital was unusually quiet.

Spyropoulos explained to Jan that APS, also known as "sticky blood," or Hughes syndrome, was an autoimmune disease in which the body produces antibodies, or immune fighter cells, that mistak¬enly disable the very proteins in the blood that the body needs to prevent excessive clotting. Without these proteins, called phospho¬lipids, your blood begins to clot and has no mechanism by which to stop clotting.
As Dr. Spy talked, Jan began to put the pieces together. One of the functions of the immune system is to act like a rapid-response SWAT team, reacting to any invading microorganism, such as viruses or bacteria, by producing antibodies—fighter cells—which seek out and destroy those unhealthy and often life-threatening organisms.

But in a wide range of autoimmune diseases, the body's im-mune cells lose their ability to read the difference between your own healthy cells and the foreign bacteria or viruses—or other un¬recognizable microscopic organisms from the environment around you—that enter your body. They don't stop at merely disabling these invading foreign agents, they go on to destroy the body's own healthy tissue in deadly rounds of friendly fire. For reasons scien¬tists are only now beginning to understand, the immune system goes on an erratic rampage, disabling the body itself.

In Jan's case, antibodies that were supposed to keep her healthy were instead attacking the very phospholipids that were instrumental to keeping her blood from clumping like cottage cheese in her veins.

Antibodies that turn on one's own tissue are known as auto-antibodies—antibodies meaning "fighter cells," auto literally mean-ing "self." As with many of the more newly recognized autoimmune diseases, isolating and testing for specific autoantibodies that point to the diagnosis of APS can be tricky to perform, and new blood tests for APS, in particular, are hard to compare from one lab to the next. At Jan's office visit several weeks later, Dr. Spyropoulos ex¬plained to her that her screening test was "positive for autoantibodies that show you have APS." Although a second follow-up blood test didn't confirm as high a level of those autoantibodies, nevertheless, Spyropoulos told Jan, "I think it fits. Your body is certainly acting like you have APS." In 2003, antiphospholipid an-tibody syndrome was a recently discovered disease; physicians had only known of its existence for twenty years. "There may be other antibodies involved that we don't yet understand or know how to test for," he admitted to Jan. "But that doesn't mean that we can't name and treat your disease."

Dr. Spy started Jan on much higher than usual doses of the heavy-hitting anticoagulant Coumadin, which is often required for patients with sticky blood. He also set her up on a constant home blood-monitoring program so that she could keep tabs on her co¬agulation levels around the clock. When Jan failed even on this regimen, he started her on long-term self-injections of an antico-agulant known as low-molecular-weight heparin, which had only recently been used to treat patients with APS who had not re-sponded to Coumadin therapy.

Today, Jan has expert supervision of her case and is better able to manage her disease. But myriad threats still lurk in her future. Patients with APS have a dramatically increased risk of migraine, sudden stroke, multiple sclerosis (MS), and lupus, the latter a dis¬ease in which the immune system develops antibodies that can mis¬takenly attack a range of organs in the body, including the joints, kidneys, heart, lungs, brain, and skin. Like all autoimmune pa¬tients, Jan is statistically three times more likely than others to be struck with more autoimmune diseases down the road.

Meanwhile, four years after her diagnosis, the side effects from the drugs Jan takes pose additional problems. She lives with constant bruising that she describes as "permanent bands of discol¬oration across my abdomen." Recently, she knocked her foot against the side of a swimming pool, and what started as a tiny bruise morphed into a black and blue hematoma from heel to toe, requiring a trip to the ER.
Those kinds of crises are commonplace for her now. But Jan doesn't just worry about what might happen if she were to be insuf¬ficiently anticoagulated again. She worries, she says, "about uncer¬tainties like how long will I be able to stay in medicine?" Already, Jan has opted to retire early from the operating room, concerned that the damage APS has done to areas of her brain and her result¬ing brain fog might jeopardize her ability to keep "the promise I make to all my kids' parents that I will do my best to take care of them in the operating room." Having stepped out of anesthesiol¬ogy she has decided, instead, to work with children in palliative and hospice care.

She and David also want to backpack again, but she asks, "Will we be able to? What if I bleed and we're too far from help?" She also dreams of rejoining overseas medical missions to help chil¬dren. But she's not willing to risk falling sick far from U.S. borders. "U.S. doctors don't know much about autoimmune diseases in gen¬eral and APS in particular," she explains. "What about doctors in the remote parts of India or Belarus or Kenya or Brazil or the other places I have worked?"

Despite all this, she pushes herself to ride her bike, swim, and even run as often as she can. She pushes herself, she says, "because I'm afraid if I stop, I'll never get going again."

In a certain light, it makes sense that six out of the seven doctors whom Jan saw completely missed her disease. Healthy women in the prime of life rarely have lung clots, much less APS. Still, doctors didn't miss Jan's disease just because blood clots seem a counterin¬tuitive diagnostic call in a hard-core cyclist, or because APS is a relatively rare disease. Statistically, Jan's chances of having APS at the age of forty-nine were greater than her risk of having ovarian cancer or leukemia—uncommon cancers that physicians routinely test for when telling symptoms appear. In fact, recent studies reveal that antiphospholipid antibodies are found in 2 to 5 percent of the population. As many as a quarter of women with recurrent miscar¬riages end up being diagnosed with the autoimmune disease APS, and one in five women who've suffered blood clots in the legs or strokes in the prime of life test positive for APS, making it more prevalent in women than leukemia and ovarian cancer combined.

No, the real reason doctors missed Jan's syndrome is because APS falls into the category of one of nearly one hundred autoim¬mune diseases that doctors have only in the last decade begun to recognize and understand. Almost every one of Jan's physicians failed to see that she was suffering from an autoimmune condition because, like most day-to-day practitioners, they remain unin¬formed about how to recognize patients who are suffering from these diseases in the first place. Because Jan's disease was autoim¬mune in nature, they missed the call.

THE COLD, HARD NUMBERS

Most of us, at some juncture in our lives, have played out in our minds how devastating it would be to have our doctor hand down a cancer diagnosis or to warn us that we are at risk for a heart at¬tack or stroke. Magazine articles, television dramas, and news headlines all bring such images home. But consider an equally dev¬astating health crisis scenario, one that you rarely hear spoken about openly, one that receives almost no media attention. Imagine the slow, creeping escalation of seemingly amorphous symptoms: a tingling in the arms and fingers, the sudden appearance of a speck¬led rash across the face, the strange muscle weakness in the legs when climbing stairs, the fiery joints that emerge out of nowhere—any and all of which can signal the onset of a wide range of life-altering and often debilitating autoimmune diseases.

Imagine, if you can: the tingling foot and ankle that turns out to be the beginning of the slow paralysis of multiple sclerosis. Four hundred thousand patients. Excruciating joint pain and inflamma¬tion, skin rashes, and never-ending flu-like symptoms that lead to the diagnosis of lupus. One and a half million more. Relentless bouts of vertigo—the hallmark of Meniere's. Seven out of every one thousand Americans. Severe abdominal pain, bleeding rectal fissures, uncontrollable diarrhea, and chronic intestinal inflammation [...]

 

[Gaby]

SHIELDING YOUR IMMUNE SYSTEM: RETHINKING FOOD, STRESS, AND EVERYDAY CHEMICALS

When Gerard Mullin was forty-three years old, he was already a who's who in medicine. He was head of the Gas-troenterology and Hepatology Division at North Shore University Hospital in Manhasset, New York, and had contributed scores of papers to top medical journals on two particularly difficult-to-treat autoimmune diseases of the digestive tract, Crohn's disease and ulcerative colitis. Mullin was an expert on both of these inflamma¬tory bowel diseases—which afflict 1 million Americans, one hun¬dred thousand of whom are children—and patients lined up to see him for the kid-glove care he gave to their cases. The obligatory ten minutes most physicians spend per patient often became an hour of discussing drug strategies and counseling patients on how to man¬age life-derailing symptoms, including abdominal pain from severe inflammation of the digestive tract, diarrhea, and rectal bleeding. It was nothing for Mullin to call a patient over the weekend to see how he or she might be faring on a new medication.

Then, in September 2003, without warning, the unexpected happened: Mullin went from being an autoimmune-disease special_ ist to being a forty-three-year-old patient with a roaring a utoiin_ mune disease of his own almost overnight.

During the summer leading up to that September, Mullin had been unusually stressed out. In addition to working grueling hours because of hospital staffing shortages, he was caring for two dying parents. He began to experience minuscule muscle twitches in his arms and legs. A colleague suggested that Mullin have a spinal tap to rule out multiple sclerosis—although the likelihood of MS, given his atypical symptoms, was remote. Still, hospital doctors often over-test colleagues; it is not unusual for one doctor to send an¬other for a wide battery of potentially unnecessary hospital tests "just to rule everything out."

During the spinal tap, or lumbar puncture, a terrible medical mishap occurred: the lumbar puncture was made into what physi-cians refer to as the danger zone—the cauda equina—a group of nerve roots that send and receive messages to and from the lower abdominal organs and down into the legs. When these nerves are damaged, sensation to the legs can be seriously impaired. Not yet aware of what had happened, Mullin left the procedure experienc-ing excruciating pain. The puncture into his spine began bleeding. Something was terribly wrong. His brother drove him to the emer¬gency room at New York Presbyterian Hospital/Weill Cornell Medical Center where he was hospitalized until the bleeding stopped. Physicians treating him told him that they could only hope that the pain would lessen with time as the area began to heal. There was nothing more they could do.

But a new problem developed while he was in the hospital. The puncture began seeping spinal fluid, and Mullin developed de¬bilitating headaches. In October 2003 he underwent a procedure to have the leak patched. But in a second corrective procedure in Feb¬ruary 2004, blood was mistakenly injected back into the spinal fluid while he was being treated under local anesthesia, sparking a rapid autoimmune reaction that would nearly cost Mullin his life. Since blood does not normally enter the cerebrospinal fluid, the body viewed these new, circulating blood proteins as potentially dangerous invaders that they needed to destroy. Mullin's immune system sent out autoantibodies to wipe out these blood proteins—but in the process these same autoantibodies also targeted the in¬nermost layers of the sac that surrounded Mullin's spinal cord and the already inflamed nerve root of the cauda equina. Known as arachnoiditis, this devastating autoimmune disorder can lead to paralysis in the legs and turn life threatening as it attacks nerves throughout the lower organs of the body, even shutting down the bladder and bowels. (If the name arachnoiditis makes you imagine "land of the spiders," that's no coincidence: the nerve network that the immune system begins to demyelinate looks something like a spider web's intricate fibers spanning out from the lower spinal cord.)
Mullin's case was no exception. The burning pain down the back of both legs was constant. He was too dizzy to stand. He had poor control over his bladder and bowels. On April 18, 2004, two months after having had the leak patched, his heart began to beat irregularly and he began to bleed heavily through his gastrointesti¬nal tract. Doctors started him on a third course of extremely high-dose steroids in hopes that it would help to stop the bleeding and the damage to his nerves. But he continued to worsen. He was put on a ventilator in intensive care. Mullin's blood pressure fell so low the hospital staff couldn't get a reading. Doctors managed to resus¬citate Mullin with injections of cardiac medications and massive plasma and blood infusions. That evening he was told that his heart was so weak he might not live through the night.

But he did. The following day, doctors were finally able to stop the gastrointestinal bleeding and regulate Mullin's heartbeat and blood pressure. He was released one week later on heavy doses of oral steroids. The pain remained untenable. His arachnoiditis¬which keeps most sufferers in a wheelchair—was so severe he couldn't walk across a room without feeling as if his back and legs were aflame, yet there was nothing more that modern medicine could do for Gerry Mullin. He was bedridden, on full disability, and the future was bleak. "I had become just another hard-to-treat patient that doctors didn't know what to do with," he says, look SHIELDING YOUR IMMUNE SYSTEM • 221
Iing back . “They’d run out of answers. I was unmarried, disabled, living alone, unemployed, and for the first time staring at the colder,
uncaring side of modern medicine that patients so often complain about."

Those seven months of hell taught Gerry Mullin a lot. Like many physicians who find out in an all-too-chilling manner what it's like to be lying helpless in a hospital bed rather than standing in a white coat over bedridden patients, Mullin became a changed man. There had to be something more—beyond conventional med¬ical approaches and drugs—that he could do to help himself. Mean¬while, his father had passed away, and his mother, who lived an hour and a half away, was very near to dying. Mullin was unable to get to her bedside, but he talked to his mother often. Growing up, she had owned a health-food store in the small town of Pomp¬ton Lakes, New Jersey, which had offered an array of health foods and supplements decades before health-food stores became part of mainstream America. She had been well known in their community for her vast knowledge about how a healthy diet and dietary sup¬plements can affect overall wellness. Over the years she had often chastised her son for focusing only on pharmaceutical drugs when treating patients. "You're going too medical on me, Gerry," she would warn him, encouraging him to offer patients more holistic treatment options. She believed in the wisdom of Sir William Osler, the Canadian physician revered as the father of modern medicine, who said that "the good physician treats the disease: the great phy¬sician treats the patient who has the disease." Diet and nutrition were, she felt, essential.

DISCOVERING THAT FOOD IS MEDICINE

Over the next several months—his laptop perched on his bed—Mullin prodigiously researched how a carefully manipulated diet along with dietary supplements has been shown in some studies to lessen the autoimmune reaction by helping to dampen down the production of cytokines—the signaling molecules that tell the dangerous invaders that they needed to destroy. Mullin's immune system sent out autoantibodies to wipe out these blood proteins—but in the process these same autoantibodies also targeted the in¬nermost layers of the sac that surrounded Mullin's spinal cord and the already inflamed nerve root of the cauda equina. Known as arachnoiditis, this devastating autoimmune disorder can lead to paralysis in the legs and turn life threatening as it attacks nerves throughout the lower organs of the body, even shutting down the bladder and bowels. (If the name arachnoiditis makes you imagine "land of the spiders," that's no coincidence: the nerve network that the immune system begins to demyelinate looks something like a spider web's intricate fibers spanning out from the lower spinal cord.)

Mullin's case was no exception. The burning pain down the back of both legs was constant. He was too dizzy to stand. He had poor control over his bladder and bowels. On April 18, 2004, two months after having had the leak patched, his heart began to beat irregularly and he began to bleed heavily through his gastrointesti¬nal tract. Doctors started him on a third course of extremely high-dose steroids in hopes that it would help to stop the bleeding and the damage to his nerves. But he continued to worsen. He was put on a ventilator in intensive care. Mullin's blood pressure fell so low the hospital staff couldn't get a reading. Doctors managed to resus¬citate Mullin with injections of cardiac medications and massive plasma and blood infusions. That evening he was told that his heart was so weak he might not live through the night.

But he did. The following day, doctors were finally able to stop the gastrointestinal bleeding and regulate Mullin's heartbeat and blood pressure. He was released one week later on heavy doses of oral steroids. The pain remained untenable. His arachnoiditis¬which keeps most sufferers in a wheelchair—was so severe he couldn't walk across a room without feeling as if his back and legs were aflame, yet there was nothing more that modern medicine could do for Gerry Mullin. He was bedridden, on full disability, and the future was bleak. "I had become just another hard-to-treat patient that doctors didn't know what to do with," he says, looking back. "They'd run out of answers. I was unmarried, disabled, living alone, unemployed, and for the first time staring at the colder, uncaring side of modern medicine that patients so often complain about."

Those seven months of hell taught Gerry Mullin a lot. Like many physicians who find out in an all-too-chilling manner what it's like to be lying helpless in a hospital bed rather than standing in a white coat over bedridden patients, Mullin became a changed man. There had to be something more—beyond conventional med¬ical approaches and drugs—that he could do to help himself. Mean¬while, his father had passed away, and his mother, who lived an hour and a half away, was very near to dying. Mullin was unable to get to her bedside, but he talked to his mother often. Growing up, she had owned a health-food store in the small town of Pomp¬ton Lakes, New Jersey, which had offered an array of health foods and supplements decades before health-food stores became part of mainstream America. She had been well known in their community for her vast knowledge about how a healthy diet and dietary sup¬plements can affect overall wellness. Over the years she had often chastised her son for focusing only on pharmaceutical drugs when treating patients. "You're going too medical on me, Gerry," she would warn him, encouraging him to offer patients more holistic treatment options. She believed in the wisdom of Sir William Osler, the Canadian physician revered as the father of modern medicine, who said that "the good physician treats the disease: the great phy¬sician treats the patient who has the disease." Diet and nutrition were, she felt, essential.

DISCOVERING THAT FOOD IS MEDICINE

Over the next several months—his laptop perched on his bed—Mullin prodigiously researched how a carefully manipulated diet along with dietary supplements has been shown in some studies to lessen the autoimmune reaction by helping to dampen down the production of cytokines—the signaling molecules that tell the immune system to react to an invader and that, if they become uncontrolled, can prompt the production of autoantibodies which attack in a friendly-fire assault, resulting in autoimmune disease. As a physician, Mullin was able to sign up for online confer¬ences and courses in an emerging field of research being called "integrative medicine." He became, he says, "very educated" on what a food-as-medicine approach can do to affect autoimmune activity in the body. He consulted several other like-minded physi¬cians who specialized in alternative and complementary care. To¬gether, the medical experts devised a carefully thought out dietary and supplementation plan to augment the conventional therapy with steroids that Mullin was using. Mullin began to consume a completely whole-foods diet coupled with nutritional supple¬ments, with the hope that it would help to temper the autoimmune response that was raging through the nerves in the lower half of his body.

Over the next eight months Mullin's constant pain and weak¬ness began to ebb. His near-constant dizziness and heart-rate swings diminished. By December 2004, Mullin was able to get into a car and drive for the first time in fifteen months. His first priority was to see his mother, who had been hospitalized. He shared with her his belief that a holistic approach to his illness had allowed him to take back his life. He had decided, he told his mom, to pursue a PhD in nutrition to augment his medical degree. "She never said, 'I told you so,' " Mullin recalls. "She just said she thought it was about time." A few weeks later, she died.

Today, Mullin appears to be the portrait of health. It is hard to believe, watching him make in-patient rounds at Johns Hopkins Hospital, where he serves as director of Integrative GI Nutrition Services, that he spent more than a year disabled from a neurologi¬cal autoimmune disease. He now regularly employs a holistic method to help keep his own autoimmune disease in check and feels it's critical to offer the autoimmune-disease patients he sees each week complementary approaches to treatment in addition to traditional drug therapies. His papers on how vitamin D helps to prevent autoimmune disease are as likely to appear in Nutrition in Clinical Practice as his papers on T-cell activity in Crohn's disease have been in Inflammatory Bowel Diseases. He now serves as a fel-low at Dr. Andrew Weil's program in integrative medicine at the University of Arizona.

"The idea that we should rely solely on drug therapies to help autoimmune-disease patients is antiquated," Mullin posits as we enter his Hopkins office, where photos of his nieces and nephews sit on the windowsill and complementary health tomes line book¬shelves. He sits down at his desk, his large hands clicking on the keyboard and moving the computer mouse with lightning speed, taking me on a virtual tour of research papers linking special diets and supplements to better outcomes for autoimmune-disease pa¬tients. "Drugs alone should no longer suffice as quality care," he sighs, rubbing his hand over his three-day stubble of beard. "We know so much about the potential for special diets and supplemen¬tation to help modulate autoimmune disease and we have to help patients reap those benefits." Still, the majority of doctors do not understand the role that diet plays in helping to ameliorate autoim¬mune disease. "Even in the field of inflammatory bowel disease the firm belief is that diet plays no role," Mullin says, his fingers stee¬pled in front of his face in a gesture that belies his frustration. "Yet we have clear data showing that changing an autoimmune-disease patient's diet and adding in simple supplements can dramatically change the course of his or her illness."

Not surprisingly, in the medical world, Mullin is still something of a lone ranger—though the landscape of traditional American med¬icine is slowly changing. Today, complementary and alternative medical centers are being developed at several top medical insti¬tutes—Hopkins, Harvard, Duke, Yale, and Stanford among them—largely driven by consumer demand. Many patients who suffer from autoimmunity are already trying dietary, supplement, and herbal approaches. Today, 21 percent of patients with autoimmune inflammatory bowel disease use complementary and alternative ap¬proaches to treat their disease. Consumers in general in the United States spend nearly $21 billion annually on nutritional supplements alone—$4 billion more than what they spend each year on going to the movies and video rentals combined.

Even so, the vast majority-61 percent—of American patients don't feel comfortable discussing the alternative therapies they use with their physicians. Nor does the typical physician probe about diet or supplements when seeing a patient during a routine visit. Few physicians are well versed in cutting-edge nutritional research or are comfortable stepping outside of the traditional drug-the-disease box of treating patients. In what is known as allopathic medicine, physicians are trained to seek out "the differential diag-nosis"—a disease name that alerts the doctor to what disease the patient has from a larger group of disorders with similar symp-toms. Often, the doctor doing the diagnosing is a specialist—trained to look specifically at the neurological, gastrointestinal, or rheuma¬tological aspects of disease—but certainly not all bodily systems together. Once the disease has a label, specific disorders and overt symptoms can be treated with pharmaceuticals that may or may not have their own symptom-producing side effects. The goal is to match symptoms to a specific disease and then prescribe the most appropriate drug.

Having a specialist is a good thing—it's usually an experienced specialist who can diagnose more quickly and accurately and en¬sure a patient has the best that modern conventional medicine has to offer. But on the downside, specialists are less likely to think of the body as an interconnected, holistic system. Physicians who focus solely on a drug-the-disease approach often miss the interre¬lationships of the patients' genetic background and predispositions, their history of infection, the burden of environmental chemicals and heavy metals that they may carry within, and their eating hab¬its. In fact, a 2007 study of fifty-six second-year gastrointestinal fellows from top academic institutions in the United States bears this out all too well: 70 percent of the fellows reported having had no rotation in inpatient nutrition at all, and 87 percent had never been assessed for competency in nutrition. And yet these were sub¬specialty doctors in training from the nation's top hospitals who would be specifically treating those with diseases of the gut. Coun¬seling autoimmune patients about helping to quiet the inflamma¬tory response through nutrition, in addition to drug therapies, necessitates a paradigm shift in medicine—toward seeing a patient's complex biology as a dynamic, fluid, interlocking system where small and seemingly insignificant changes to the system, including shifts in diet, can dramatically influence the well-being of the whole patient.

What exactly does a special diet that can help to subdue the auto-immune response look like? As anyone who likes to browse in bookstores knows, consuming a healthy diet is a topic that fills whole bookshop aisles and magazine stands. But oddly enough—despite the fact that nearly 24 million Americans suffer from auto-immune diseases and that number is steadily on the rise—there is not yet a recognized diet focused on combating autoimmunity through nutrition.

Before discussing what an anti-autoimmune diet should con-sist of, it might be helpful to consider why our current diet is so harmful to our immune system in the first place.

THE RISE IN FACTORY-MADE FOODS

One of the most significant ways that foreign antigens, which may trigger the immune system to overreact, can enter the body is through what we eat. In the past hundred years we've completely changed what we digest as food. We've gone from a whole-foods diet—one in which we digested whole grains, fruits, vegetables, poultry, and livestock produced locally or on our own land—to a processed-food diet. This processed-food diet often consists of highly preserved bread products, doughnuts, prepackaged coffee cakes, and cereals laden with sugar for breakfast. (Think of it: one bowl of Cocoa Puffs has the same amount of sugar as a 50-gram bag of Hershey's Kisses, and a bowl of Corn Pops is the sugar [...]

 

[brainwave]

Thanks for this. A close friend of mine previously ended her studies because of complications from lupus. With all the meds and her fragile immune state she could not leave the house. Thankfully she has read the recommended books and follows the diet we do here. So she is doing better now and working on her first research publication. This will be a great addition to the lists of books.

brainwave

 

[shijing]

According to Stephen Edelson, author of "What Your Doctor May Not Tell You About Autoimmune Disorders", it is actually over 50 million Americans. That is more than the double that they will admit!

Thanks for that recommendation as well, Psyche -- I'm going to have to look that up. I've also got another book by Mary J. Shomon, Living Well with Autoimmune Disease that I'm going to start on soon. I'm starting to think that this topic is something that needs to be scrutinized because it ties so many different things together, and is huge in terms of sheer numbers, as you indicate above. Thanks also for putting those excerpts up!

 

[HiThere]

Thank you Shijing and Psyche, useful quotes to have handy, I will order the books.

 

[Gertrudes]

Thank you Shijing for bringing up this book, and thank you Psyche for these quotes. It was scary to have read them though. It was scary to see how absolutely debilitating and life threatening these conditions can be.

Physicians who focus solely on a drug-the-disease approach often miss the interre¬lationships of the patients' genetic background and predispositions, their history of infection, the burden of environmental chemicals and heavy metals that they may carry within, and their eating hab¬its. In fact, a 2007 study of fifty-six second-year gastrointestinal fellows from top academic institutions in the United States bears this out all too well: 70 percent of the fellows reported having had no rotation in inpatient nutrition at all, and 87 percent had never been assessed for competency in nutrition. And yet these were sub¬specialty doctors in training from the nation's top hospitals who would be specifically treating those with diseases of the gut. Coun¬seling autoimmune patients about helping to quiet the inflamma¬tory response through nutrition, in addition to drug therapies, necessitates a paradigm shift in medicine—toward seeing a patient's complex biology as a dynamic, fluid, interlocking system where small and seemingly insignificant changes to the system, including shifts in diet, can dramatically influence the well-being of the whole patient.

This is another scary part. A great percentage of Gastrointestinal trainees having no training in nutrition. It is very sad to see how the human body is still so very much seen as an agglomerate of individual and isolated parts and organs to be fixed with drugs. Scary, exasperating, and mind boggling.