Although I staunchly support the responsible and appropriate use of natural healthcare, there are standards. Standards as to who should be doing what, under what license, and in which cases. I’ve written before about the irresponsible and potentially-dangerous thinking among some “natural” “practitioners” (unlicensed, deficient in real training), and a situation popped up recently that I couldn’t ignore. I can’t stay silent.
In med school, they tell you to never treat family and friends. I have broken that unofficial rule ever since we started practice. Sometimes, I’ve regretted it; other times, I know I’ve saved my loved ones.
I would have followed that rule and referred them to another practitioner…if I could have found a practitioner worth his/her salt. But alas, unfortunately, it’s incredibly hard to find–and trust–other competent practitioners to refer to for the difficult and complex issues my loved ones face. And because I love them, I only want the best for them. At the risk of sounding arrogant (I don’t mean to be), most of the time, the best practitioner for the job is myself.
But there’s a real risk in taking on the cases of loved ones. What if they don’t listen? And unfortunately, many of them don’t, to their peril.
In years past, I have had to relinquish their cases in a fit of tough love, passing them on to a less qualified practitioner, knowing that my loved ones won’t get better under that other person’s care. I know that eventually, my loved ones will return to me, sometimes years later, with newfound or renewed faith, ready to listen this time.
The tragedy lies in the time that passes in between. The missed findings/diagnosis. The failed remedies. The spent resources. The lack of results and progress. The worsening symptoms. The reduced options. The continued suffering. The lost time. The lost hope.
The practitioner the loved one opts to see may or may not have formal training. They may or may not have a license. But always, and I mean always, they miss something. Their information is outdated, misguided, and/or just plain wrong. Always, they don’t spend the time that I do, researching the loved one’s case, their symptoms, their goals. Always, they don’t take enough time to listen. Never do they order enough tests, or the right tests. Never have they taken the training I have, or listened as intently as I do. Never do they care as much.
Despite my best efforts, healthy boundaries, increasingly seasoned clinical experience, and improved (repeated) explanations, this happened again.
A couple of years ago, after an exceptionally stressful period of time, a friend of mine developed an extensive set of vague and confusing symptoms. These symptoms weren’t confined to one cell type, tissue, organ, or system; they seemed to impact every aspect of her health.
She made appointments with multiple doctors, who all tossed out wastebasket diagnoses. “Depression”, they said. “Sleep deprivation.” “You’re fine.” And all that other such nonsense that drives females up a tree when they visit a practitioner who, almost like clockwork, notes their feminine anatomy and assumes their symptoms are all in their heads, no big deal, nothing to take seriously. Right.
Finally, saturated with frustration and practitioner-denial and running skimpy on real answers (read: none), her next consultation was with Dr. Google.
I don’t blame her, in this instance. (I do take issue with the people who go straight to Google first thing, and attempt to navigate the depth of the abyss that is human physiology on their own, but that’s another matter.) It stands to reason that if someone has consulted the proper professionals and those professionals have failed (for one reason or another) to find the answer, and you don’t know what else to do….well, the internet is at your fingertips, and it’s generous with its information. Information that may or may not be accurate, but at least it’s something.
Dr. Google issued a possible working diagnosis: Lyme Disease. Oh yeah; that’s a real treat. It seemed to fit what she was experiencing, though. But a firm Lyme diagnosis is tough. She was tested; it came back negative. But the more time went on, the more convinced she became. Learning that the diagnostic tests for Lyme are (very) often false-negative clinched it.
Through an alternative practitioner, she learned about a layperson (with firsthand experience with Lyme Disease, but no formal training–at least, nothing that could be trusted or verified). This layperson had a device. This device, like so many others that (rightly or wrongly) remain on the “fringe” of healthcare, is said to work on the level of the body’s bioelectric energy.
Fair enough. By this point, I was more than a little skeptical of the layperson, but the device couldn’t be written off yet. We are bioelectric energetic beings, after all. (Yes, it’s true; we produce electricity an emit our own waves that can be detected up to 20 feet away, or so I was taught in med school.)
My friend got really excited. She searched for information on this device, and found it. She emailed me links to websites and PDF files to go investigate. She wanted to share. I wanted to learn. It was a symbiotic relationship (translation: win-win).
I scanned the pages (both web and PDF). They were documents that not only contained basic information about Lyme Disease, but also various “settings” that could be programmed into the device for specific goals.
That’s when my eyes widened.
The information was all wrong. The author (also a layperson) claimed that Lyme Disease was a Th1-mediated infection (that’s immunology nerd-speak for a specific type of immune response). They recommended an entire list of Th2 stimulators to fight the infection.
No, no, no, no.
But wait–it gets worse. The author also claimed that “interleukin” was a “toxin secreted by the Lyme bacteria”.
Had this person ever taken a single immunology course? I’m thinking not. “Interleukin” is actually “interleukins” (plural), and they’re not secreted by Lyme bacteria, nor are they a toxin; they’re biochemicals our bodies actually manufacture in response to any type of infection or other agent that perturbs the immune system. And we greatly need these to fight infection. The Lyme-causing bacterium itself only causes a Th1 response in the very early stages, after which it switches over to a Th2 response. And unless the Th1 immune reaction itself is threatening the person’s life or causing what could become permanent injury or damage, stifling that response is the absolute last thing you want to do.
And then the author proceeded to list off several “settings” that could be used to combat various aspects and symptomology of Lyme Disease, including a setting for reducing “interleukin”.
“But she’s really smart,” my dear friend said of the layperson who turned her onto this device. “She’s a pilot and everything.”
I was really irritated–not at my friend, but at the people clearly trying to take advantage of her.
I said, “honey, I’m smart, too; but I’m a doctor, not a pilot. You wouldn’t get into a plane with me at the controls and trust me to get us off the ground, much less keep us in the air. We may all be smart, but we all have formal training in our respective areas. Her trying to climb into a doctor’s shoes is like me trying to slide into the captain’s chair. In either case, you’re going to crash and burn.”
The sad part about chronic diseases/disorders is that there is always someone waiting to capitalize on those patients and essentially turn them into a herd of cash cows.
Some of the remedies peddled have merit. So many others don’t.
In subsequent conversations, I gathered additional data about this layperson by asking other questions, and also by making mental note of various tidbits my friend mentioned that stuck out at me.
It didn’t take me long to accumulate quite a list.
Kangen water. Yeah, the alkaline stuff that kills your stomach acid. Sold by a multi-level marketing company to the tune of about four grand.
Juice Plus. Yeah, that multilevel marketing company-driven “whole foods” supplement that essentially begs your immune system to form new food intolerances/sensitivities.
“Oh, but she’s good at genetics! She trained under a doctor.”
Except for that part where the “doctor” isn’t licensed at all; he’s an unlicensed naturopath, and when I looked up the school he went to, I knew it well, for its reputation as an online diploma mill. And is this guy the reason that the layperson’s genetic interpretation appallingly classifies HLAs (Human Leukocyte Antigens) as “enzymes”? Yeah….no; HLAs are receptors (think antennae) on the surfaces of cells that detect and bind to other biomolecules in the blood. They are not enzymes that turn one substance into another.
And if these types of people are claiming to be experts in this field, with such little knowledge of the basic fundamentals that they’re making gaffes like these, how reliable are their “treatment” protocols??
And this layperson has claimed to have cured her Lyme Disease. Was she ever tested or evaluated in any way that can be measured? Was she ever re-tested or re-evaluated after her “treatment” to ensure any kind of documentable progress?
No. I don’t remember if she’d ever been initially tested, but I do know that she’s never been re-tested. Eradication of the disease has not been verified.
And yet, this layperson is claiming to “help” other people. Using these MLM products. Using supplements that patients don’t need (and could potentially harm them). Operating on the basis of extremely inaccurate information.
The layperson is geographically closer than I am, which puts me (and more importantly, my friend) at a serious disadvantage. My friend is in more frequent contact with her. This is not a cause of my being butthurt or put-off or ego-bruised.
It IS about seeing a good friend, sick and vulnerable, place her trust in the hands someone with erroneous information because that layperson has the geographical advantage and thus, she ends up being the “practitioner” of choice because she can be seen more often and in person (as opposed to myself, over a thousand miles away, and reachable pretty much only by phone or email).
It’s about this person having 5% of my knowledge, and her knowledge base does not include awareness of potential pitfalls to avoid when trying to heal this infection.
And it’s all about my friend inadvertently prolonging her suffering as a result.
That’s why I’m less-than-thrilled.
I do hope that perhaps by mistake, my friend gets better in spite of being led down such a way-wrong path. That’s the eternal optimist in me.
But the jaded cynic in me knows that that probably won’t happen.
My friend does feel better. And I’m happy for her. However, there are good and bad reasons for feeling good and bad; a “good” feeling could result from true healing (good) or immune incompetence or successful microbial self-defense (bad), while a “bad” feeling could result from the healing process (good) or further progression or penetration/spread of the infection (bad). And it’s nearly impossible to determine which is the case, based on the symptoms alone.
Only time will tell.
Meanwhile, I hope this layperson goes back to doing what she was trained to do: fly planes.
But oh wait–she doesn’t do that anymore. She stopped when she’d gotten sick…and hasn’t picked it back up…
…which leads me to wonder…is this layperson who swears she cured her own Lyme Disease truly as healthy as she’s claiming to be?