Ten Controversial Medical Conditions: An Introduction

Consider this list.
• Fibromyalgia
• Chronic fatigue
• Candida overgrowth
• Leaky gut
• Non-celiac gluten sensitivity
• Chronic Lyme disease
• Intestinal parasites
• Black mold illness (including sick building syndrome and multiple chemical sensitivity syndrome)
• Mast cell activation syndrome (MCAS)
• Chronic inflammatory response syndrome (CIRS)

Back in medical school, the only one of these I’d actually ever heard of was intestinal parasites, and all of us wondered how much we actually needed to learn about them. We were taught that Peace Corps volunteers were at risk for parasites, as were the grunts in Vietnam. Our now-ubiquitous plastic bottles of water were non-existent in most parts of the world, including the US, and if you were somewhere where you had to drink questionable water you boiled it and added iodine tablets. Not tasty, but effective.

With the last outbreak of amoebic dysentery in Chicago occurring at the 1933 World’s Fair, you figured you could put your knowledge of parasites on the back burner of your brain while you tackled everything else you had to learn in medical school. But then international adventure travel and massive worldwide immigration to the US changed everything, and medical students today are more attentive when the parasitologist steps up to the lectern.

Once diagnosed, intestinal parasites are pretty easy to treat, but unfortunately there’s a lot of disagreement about what constitutes a disease-causing parasite and what’s merely going along for a ride in your colon. One of the big controversies concerns Blastocystis hominis, which many gastroenterologists will tell you is harmless, a position disputed by much of the rest of the GI world.

And then there were nine
The other nine controversials slowly materialized over the decades I’ve been in practice. It’s hard to believe that anyone considers them controversial anymore. The sheer numbers of people with Lyme disease (300,000 new patients annually) or fibromyalgia (estimates as high as 10% of women) should be enough to convince even the most hardened skeptics.

Thinking about this list as a group, I realized they follow a similar pattern, as follows.
• Initial descriptions of the illness by a small group of physicians (who would in time get to know one another).
• The reluctance of a majority of medical professionals to accept the possibility that such a condition could exist.
• As a consequence of this medical stonewalling, a gradual drift of the diagnosis/treatment of the condition in question to the alternative medical community.

This led to a substantial problem with each of these conditions. First the underdiagnosis (i.e., diagnosis missed) by conventional doctors and then the overdiagnosis by the alternative community (“Your back is hurting? Must be a candida flare.”), historically populated by people who were not medical doctors.

You can guess how this single-culprit overdiagnosis occurs. There are virtually hundreds of recognized illnesses in which fatigue is a major symptom, but unless you’ve spent two years in medical school studying pathophysiology, you’re simply not equipped to be aware of their existence.

Single culprit and Occam’s razor
This focus on single-culprit diagnosis occurs very regularly in conventional medicine. To a cardiologist, virtually all chest pain is a “variant of angina,” and if you’re not scheduled for an angiogram you’ll at least find yourself having a stress test.

To a gastroenterologist, the very same pain will find you on the receiving end of a gastroscope and filling a prescription for the heartburn med Nexium.

To a chiropractic physician (I classify them as conventional docs), you’ve got a thoracic spine restriction.

This single-culprit phenomenon is called Occam’s razor, which every medical student learns about for perhaps 60 seconds before pressing the delete button in her brain. William of Ockham (not a typo—the spelling changed over the years) was a 14^th century philosopher who first expressed the idea that the simplest explanation for any phenomenon was most likely the correct one.

The razor aspect means that the scientist/doctor/researcher must cut away extraneous distracting information to get some idea of what’s actually going on. The principle of Occam’s razor is extremely important when it comes to controversial diagnoses, but you’ll see how it also can work against you.

Here’s an example where Occam’s razor is not needed. Patient arrives in an urgent care center complaining of severe sore throat and fever. Her tonsils are huge and covered with pus. A rapid strep test returns a positive result. She’s prescribed the appropriate antibiotic (which she takes as prescribed) and is fine in a day or so. There is no need to weed out other diagnoses in this situation.

Here’s an example of where, failing to remember Occam, physicians at a major Chicago medical center almost killed their patient. A middle-aged woman reported to her doctor that she was tired all the time, achy, couldn’t think clearly, and had some chest pains and a lot of digestive symptoms. Her lab tests showed only a few minor abnormalities, as did her EKG and a chest x ray.

She was given a slew of referrals to specialists, each ordering the procedure of choice for that particular fiefdom. I could tell you how during her unnecessary coronary angiogram she had a cardiac arrest and died (but she didn’t) or that during her colonoscopy her large intestine was perforated and she died of peritonitis (though she didn’t) or that during her visit to the rheumatologist he thought she might have an autoimmune disease, started her on one of the Howitzer-type immune suppressants, and she died of sepsis (she didn’t).

Instead, she survived all this, was discharged with post traumatic stress disorder (induced by the major medical center) and, finally, was horrified to discover that most of the specialists were out-of-network and thus she’s currently facing bankruptcy.

(Actually, it’s likely that more than a few deaths do occur because of the “Forgetting Occam Syndrome.” In 2016, researchers at Johns Hopkins analyzed causes of death and were horrified to find that medical errors were the third leading cause of death and that a sizable number of these deaths occurred during inappropriate diagnostic tests.)

Okay, you wonder reasonably, what does this chilling anecdote have to do with the controversial diagnoses you mentioned and Occam’s razor?

Be patient. After all, did you ever wonder why you’re all called “patients?”

Controversial diagnoses
One of the most significant reasons these controversial diagnoses are controversial is a disagreement among practitioners themselves about what constitutes the criteria for diagnosis. For example, the main reason it took so long for physicians to accept that fibromyalgia actually existed was that there were no positive test results at all. No tests meant no such thing as fibro. Ditto for chronic fatigue syndrome. And the only test for non-celiac gluten sensitivity is that you feel better when you go off gluten and feel terrible when you reintroduce it.

Take any of the controversials on our list–candida overgrowth, for example. The original description of candida overgrowth was provided by the late William Crook, MD, who put together a 70-item questionnaire that you or your physician could score and base a diagnosis on in order to initiate treatment.

Elsewhere online, Amy Myers, MD, trims candida symptoms to 10, but former Chicagoan Jeff McCombs, DC, places the number at 100. Relying on a diagnosis based solely on symptoms brings us to the specter of subjectivity. One person’s severe bloating is the next person’s normal digestion.

If each of the candida symptoms presented by a patient were evaluated by a specialist (which the $9-million-a-year hospital CEO would strongly recommend), she’d spend the rest of her incarnation undergoing diagnostic testing procedures. For years, patients brought in the Crook candida questionnaire to their physicians, whose response in most cases was not at all helpful.

Whether she knows it or not, Dr. Myers is a true Occam thinker. She trims the Crook-70 or the McComb-100 to a more palatable Candida-10 and works with these. Her excellent book The Autoimmune Solution starts with nutritional changes (gluten elimination) and nutritional supplements. Her clinic lists all the controversial diagnoses and, likely because of her Occam-style thinking, she has a high success rate getting to the root cause of chronic health problems.

All well and good.

But where can even the best intended Occam thinkers go wrong?
First, the main error is to head down a path of mistaken diagnosis and then being unwilling–doctor and patient alike–to change your mind (“Maybe it’s not candida after all”).

Second, both conventional and alternative practitioners can hyperfocus on their area of expertise. While in the care of one of Chicago’s top spine surgeons, my wife underwent five procedures (two surgeries and three spine injections) before someone discovered no one had ever x rayed her hip.

Third, although diagnostic testing is valuable, the availability of good tests for the list of controversials is limited and often not covered by insurance. If you read through the histories of the controversials, the big roadblock all pioneers faced was “OK, prove it!” from conventional medicine.

The best diagnostic tool not only for the controversials but also for symptoms in general is attentive listening. Your own doctor should be doing that.

Years ago, I did some of my training in London. The very best piece of advice I ever received? If you listen long enough and carefully enough, your patient will eventually tell you her diagnosis.

Be well,
David Edelberg, MD