From Snake Oil to Olive Oil: The Danger of Miracle Cures
Everyone likes the idea of a winning lottery ticket, a get-rich-quick scheme, or a get-out-of-jail-free card. But most of us recognize that these concepts are typically fantasies at best and frauds at worst. We may play along, buying a raffle ticket for a good cause or risking a buck or two on a scratch-off card. But really, we know it is charity or amusement, not an investment.
However, some of the most effective and most dangerous scams offer a payoff of improved health. Those of us in the rare disease community may be particularly vulnerable to this prize.
Just what I’m looking for
As we peruse the internet, our browsing habits are tracked and tabulated. Advertising algorithms know we are making doctors’ appointments, reading up on new treatments, and shopping for vitamins. It’s no coincidence when the ads that pop up on our news feed are all about miracle cures.
Weary with illness and worry, patients and caretakers may click on seemingly friendly websites and wholesome videos without our usual “buyer beware” cynicism. We want to experience the energy and attitude of the robust and cheerful spokespersons. The next thing you know, we have subscribed to regular deliveries of all sorts of pills and potions.
Fine-tuned
From the onset of my husband’s diagnosis of aHUS, I was impressed by the team effort of specialists in various disciplines. In the hospital, they huddled together daily to monitor medications and supplements, as well as diet, to fine-tune proper prescriptions and proportions. Since then, the members of our local team of doctors review every lab report online and tweak their recommendations from time to time.
We quickly learned about the lifesaving effects of monoclonal antibodies for aHUS. But we also became aware of the importance of vitamin B complex to treat anemia. And we were surprised to find that high levels of potassium in vegetable juice were incompatible with some medications. Both initial treatment and long-term maintenance of this rare condition involve a careful balance of prescriptions, supplements, and nutrients.
Too much of a good thing
Many of the cure-all products touted today are simply megadoses of healthy foods or vitamins. Thus, they seem safe and are not regulated. We know we are supposed to eat our fruits and vegetables. Why not get three full servings of fruit in powder form? Or pop a couple of gummies instead of actually eating vegetables? Because if 600% of the recommended dietary allowance is powerful enough to provide all of the benefits claimed, it may be powerful enough to affect other aspects of our homeostasis.
But it’s all natural! So is arsenic, but we try to keep exposure to a minimum. But it’s organic! So are wild mushrooms, but some of them are poisonous. But it has vitamin C! So does grapefruit juice, which can interfere with a number of medications.
Too much of a good thing might be too good to be true. From snake oil to olive oil, there is a long history of promotions for exotic concoctions and familiar extracts as overpriced cures. Luckily, rare disease patients have a long history of lab work to refer to and a large team of doctors who can be consulted for guidance on such matters.
Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.
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