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by michaelbuckbee 766 days ago
Several kids in our family's social group have successfully undergone desensitization therapy for severe nut allergies.

It was much more rigorous than the author's approach, with weekly doctor visits and taking increasingly large amounts of whatever they were allergic to (starting with micrograms of nut powder).

I think my niece had the best time as she eventually was advised to start eating daily measured amounts of nutella.

I mention this mostly because I do think the author was a bit cavalier in his approach (mostly because it's hard to accurately judge dosage from wild plants) but also to just spread the word that the allergy desensitization therapies are out there and quite effective and life changing.

3 comments

I have direct experience with this and it is indeed a miracle. What's interesting is that the protocol largely emerged outside the regulatory channels, with a handful of doctors worldwide developing it once the science became clear that exposure could help and more and more offering it to patients every year. These allergists have carefully figured out regimens that work and it can take a year of daily dosing, with dose sizes increasing twice monthly, until one can safely eat, say, a handful of peanuts.

There's still today another camp: Many allergists still preach avoidance however and put fear into worried parents about the dangers of oral immunotherapy.

Because it can be hard to find an office that will run your immunotherapy program for you, or costly if you do, many parents are doing it on their own, following dosing protocols they find in Facebook groups or on YouTube. The ones I've seen have been supportive and helpful, not quackery.

Meanwhile the medical establishment is finding ways to monetize this immunotherapy by turning, for example, peanut doses into pharmaceuticals, e.g. Palforzia, which is a recently FDA approved "food allergy treatment" and is in fact simply peanut protein.

Oral immunotherapy is indeed dangerous. Eosinophilic esophagitis is real. Anaphylaxis is common. It's a long, tedious road, with daily dosing for years, and in many people the treatment ends in failure rendering the effort wasted.

Although many do achieve remission, there is no guarantee that the allergy is gone for good. The immunity obtained by immunotherapy is not necessarily the same as natural immunity. It may not be complete and it may not be long lasting. The immune system has a long, long memory and we do not have any reliable tests to determine if anyone's immunity is permanent. For that reason allergists recommend continuing dosing indefinitely to maintain immunity, and continuing to carry an epi-pen. For the rest of your life. You will get sick of peanut butter.

All that said, we are doing sublingual immunotherapy for our son. But I am hoping that within his lifetime new treatments are developed that will free him from allergies completely.

Precise control of the immune system would be the holy grail of medicine IMO. Dysfunctions of the immune system are at the root of so many diseases, not just allergies. If the immune system could be easily trained to ignore or attack arbitrary targets at will it could likely cure almost any infection or cancer. And I bet it could be useful in treating the diseases of aging as well.

> There's still today another camp: Many allergists still preach avoidance however and put fear into worried parents about the dangers of oral immunotherapy.

Because immunotherapy can be dangerous, even when conducted in a doctor's office with supervision. I know two people with serious adverse effects requiring getting rushed to the ER.

We think we know a lot about the human body, and we do, but our immune and nervous system and its myriads of interaction paths are to a large part a mystery, with most of what we think we "know" being observed knowledge without understanding the foundation.

I asked our doctor about immunotherapy and she urged against it saying it was lots of trips each week, risky, unlikely to work and the benefits were limited.
I got desensitization from ragweed prescribed by doctor (Ragwitek). But the allergy causes me permanently irritated throat. That was right before covid, then I got scared that it will make infection easier and gave up.
> I mention this mostly because I do think the author was a bit cavalier in his approach

The author may not have had access to a physician with experience in this.

I live in the part of the US where the only physician access is what can be afforded out of pocket (not much). Self initiated treatments are the order of the day.