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Making Sense of “Controversial” Diagnoses

I’m warning you in advance. You’re entering a minefield here, with explosive views among seemingly conservative health care professionals. At least wear a helmet. Protective eyewear wouldn’t hurt either.

You wouldn’t think a slew of conditions you’ve heard about (including chronic Lyme disease, chronic fatigue syndrome, fibromyalgia, chronic Epstein-Barr, toxic mold syndrome, food sensitivities, intestinal dysbiosis, chronic inflammatory response syndrome, and mast cell activation syndrome) would, at one time or another, be the topics of very uncivilized debates among professionals, with threats of lawsuits, reports to the “authorities,” and even suggestions that medical licenses be revoked.

All for the alleged crime of making a diagnosis or initiating treatment. Believe me, this is all true, though fortunately it happened to me just once.

Years ago, when I was opening what would become WholeHealth Chicago, the chief of medicine at the hospital where I’d been an attending physician (both the chief and the hospital long deceased) warned me that if I were going to become “one of those candida quacks,” he’d work to cancel my admitting privileges.

Worth noting, by the way, that I actually did become “one of those candida quacks” and have certainly treated a lot of patients over the past 25 years with candida overgrowth syndrome (now far more accepted as a valid diagnosis).

That was yesterday
But today, in some states (Illinois not among them) doctors treating chronic Lyme are facing unpleasant pressure. At the Lyme disease meeting held last month in Chicago there was a well-attended session entitled “Protecting Your Lyme Practice.” The session was chock full of advice on strategies for how you could continue to diagnose and treat chronic Lyme patients without having to deal with self-styled authority figures.

Here in the Midwest, where everyone acknowledges there are lots of ticks and lots of Lyme disease, the chronic Lyme specialists are not so much threatened as ignored. Worth noting that if you call Mayo Clinic and ask for an appointment to treat chronic Lyme, they’ll tell you they don’t treat it (same goes for fibromyalgia and chronic fatigue syndrome).

How did this conflict come about? It’s actually an interesting story, to me, at least, though you may think otherwise.

To my mind, the problem is that conventional medical education in both the US and Canada is simply stuck in about 1955 and, with the exception of a few new surgical techniques and some interesting new medications, has remained there, mired in tradition. If statistics show we’re healthier, it’s mainly because we’re taking steps to be healthy by eating better, exercising, and not smoking.

The tradition I’m referring to is how doctors actually think when confronted with a patient who has a plethora of symptoms and wants nothing more than to feel better. The way physicians interview patients and these doctors’ thought processes and note taking has pretty much stayed unchanged for almost 75 years.

How your doctor is trained
Your doctor is trained to look for disease. To do so, she first asks a litany of questions that all medical students can recite in their sleep. Then she looks for evidence of that disease via tests, imaging studies, biopsies, and the like.

Once she’s got one or more positive test results she can initiate a cure, or at least begin treatment based on evidence.

But let’s return to the litany of questions. There are virtually none that address topics such as “So what’s been happening in your life?” or “What else have you been noticing, no matter how trivial?” No questions that address how well you think your body has been functioning. Remember that word functioning. It’s key.

Unfortunately, if your diagnostic tests return negative results then woe! In your doctor’s mind, you have no disease except an emotional one. (“You must be depressed. Let me refer you for therapy. Here’s an antidepressant.”) You’re supposed to be reassured by the idea that there’s nothing wrong with you and that nothing can be done.

And so you move on, from one doctor to the next and then the next.

That’s medical thinking, circa mid-20th century. The same questions, the same tests. I recently had a patient who’d been ill for several years, had seen at least ten doctors, and literally had the same normal blood tests endlessly repeated. She would tell the doctors “I don’t need another blood count.” Leafing out her test results she’d say, “See I’ve had 20!”

And then, for far too many patients, it goes from bad to worse
Out of desperation, our patient goes online and encounters one or more of the controversial conditions listed above. Yes, the symptoms are vague (tired, achy, poor concentration), but she thinks to herself that one of them could be a possibility.  Unfortunately, though, the symptoms of chronic fatigue syndrome are very similar to those of chronic Lyme, toxic mold, Epstein-Barr, etc., etc.

“What gives?” she says to herself. “I can’t have them all, can I?”

She tries to discuss this with her family doctor but is dismissed out of hand. “You’ve been reading online about the latest fad diagnosis. There’s no such thing as ——-” (insert candida, chronic Lyme, Epstein-Barr, etc).

She finds someone–an MD, osteopath, chiropractor, naturopath, anybody–willing work with her and, lo, the tests for Lyme are positive. But wait. So are the tests for mold, for Epstein Barr, and for food sensitivities.

And now she wonders, “Could I possibly have them all?”

She starts treatment: antibiotics for Lyme, antifungal for candida, antivirals for the Epstein-Barr virus, anti-parasite meds for parasites, and probiotics for intestinal dysbiosis and she thinks she’s feeling better for a while, but then her symptoms start returning and she gets really depressed.

“Is this my life?” she wonders. “Knocking down illness after illness like the whack-a-mole game at carnivals?”

What’s going on here?
The answer comes from a relatively new specialty called functional medicine.

In a sentence: somewhere our patient’s body is not functioning properly and because of this dysfunction she’s susceptible to a variety of illnesses that normally she’d be able to render inactive and harmless.

These illnesses, recently dubbed “stealth organisms,” had likely been acquired years earlier (the average age of acquiring Lyme disease is 11, herpes-varicella-HHV-6 and Epstein-Barr are acquired in childhood and adolescence), but had been held in check until her poorly functioning body lost control and the organism woke up and started causing trouble.

Can paying attention to how the body is functioning actually cure these conditions? Well, cure is a big word, but certainly a properly functioning body can return these infections to their dormant state.

As a quick example, when we see someone with chronic Lyme disease we’ll often prescribe antibiotics initially to reduce the population of Borrelia, followed by tests to ensure all systems are functioning properly so the organism remains dormant. With stealth organisms, flare-ups can occur but they’re usually easy to treat with herbs, homeopathy, or ozone therapy rather than multiple rounds of antibiotics.

While almost all integrative physicians have been practicing functional medicine for years, the general public hasn’t known much about it. But with the prestigious Cleveland Clinic having its very own aha! moment and establishing a Center for Functional Medicine, headed by celebrity physician Mark Hyman, MD, the medical profession is being dragged kicking and screaming from the mid-20th century directly into the 21st.

Important points: Not everyone bitten by an infected tick develops chronic Lyme. Not everyone inhaling toxic mold develops symptoms. Not everyone infected with Epstein-Barr, parasites, candida, and so forth becomes clinically ill.

Why are some people able to escape all the issues linked to these conditions but you can’t?

That’s at the heart of functional medicine. A functional medicine specialist will find out where your body isn’t working right, why it’s not, and get things in good working order again.

More on all this next week.

Be well,
David Edelberg, MD

Leave a Comment

  1. Patti Woodbury Kuvik says:

    Live the “kicking and screaming” part. Does increased levels of patient knowledge play a part?
    As a thyroid cancer patient now dependent on life sustaining thyroid hormone I (and thousands like me) constantly encounter endocrinologists who rely on outdated medication guidelines based on mediocre evidence levels to frighten patients away from anything except their beloved Synthroid branded LT4. Instead of evaluating underlying causes, they prescribe more drugs to treat the side effects of over or under medication. They will then turn around and complain when their patient turns to an “alternative” care provider. I turned to my cardiologist who had a much better research-based understanding of my thyroid hormone requirements.

  2. John Heffinger says:

    Well said bravo

  3. Caron M. says:

    Great read Dr! Can’t wait till next weeks article.

  4. Walejeski Carita says:

    Great article! Still trying to find a good functional MD here in Fort Collins, CO.
    Didn’t know how lucky I was to have Dr Edelberg. Insurance covered a plus.
    Only self pay here in Colorado! First visit over $2000!!!!! I’ll keep following Dr Edelberg long distance!!!

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