Value of Self-Experimentation With Chronic Conditions

A reader with an autistic son sent me a link to a story in the New York Times Magazine by Susannah Meadows about a boy with arthritis who was cured by dietary changes, including omega-3 and probiotics. Conventional doctors and the boy’s father had resisted trying the dietary solution; Meadows is the boy’s mother.  An expert in the boy’s problem, Dr. Lisa Imundo, director of pediatric rheumatology at New York-Presbyterian/Columbia University Medical Center, told Meadows that “she [Imundo] had treated thousands of kids with arthritis . . .  and diet changes did not work.” It took only six weeks of the dietary change to discover it did work. Eventually the boy’s arthritis was completely gone. It may have been caused by antibiotics he’d been given for pneumonia. The antibiotics may have killed his gut flora making his intestines too permeable.

Had Meadows accepted what mainstream doctors told her, her son would have taken medicine for the rest of his life — medicine that wasn’t working well. Dr. Imundo wanted to double the dose.

The reader with an autistic son explained how it related to this blog:

It particularly supports the value of self-experimentation in these chronic conditions, especially when there is heterogeneity. The heterogeneity of autism was obvious to me from early on, although I’ve come to realize it’s not obvious to everyone else. Autisms of known genetic causes have different tracks (Fragile X is the best-studied). Broad studies of autism start with a huge disadvantage: they are studying different disorders of similar presentation, and what helps in one case may harm in another. After the steady drip drip of your talking about n=1 experiments, it dawned on me that this applied to our situation. You didn’t need to do a massive, double-blind, placebo-controlled study of acne medication any more than I needed to enroll a thousand families in a study of diet and autism. I could start with dinner.

The reader found dietary n=1 experimentation with her son to be very helpful.

Update. After I wrote this, Michelle Francl, a chemist who writes for for Slate’s Medical Examiner column, complained about the “alternative medicine” in Meadow’s piece. Francl fails to mention that dietary changes completely cured the problem, thus avoiding the need for dangerous drugs that weren’t working. Francl says that Meadows has “an irrational fear of chemicals”.

9 Replies to “Value of Self-Experimentation With Chronic Conditions”

  1. I thought the follow up article got one thing right, chinese medicine, and indeed herbal medicine is just as much “chemical” in nature as pharma. There are some advantages and disadvantages to “natural” medicines. Disadvantages are lack of standardization, lack or research, etc. Advantages can be that you have access to herbals without going through a medical gatekeeper.

    But I think the fear of chemicals and the chinese medicine were red herrings anyway. Failure of tight junctions and subsequent auto-immune processes being triggered isn’t even “alternative.” Every time you turn around there is a new article linking intestinal permeability to auto-immunity in the conventional medical literature. That the doctors treating this disease are un-aware of the current research and the paradigm shift in understanding of auto-immunity is far more interesting to me than the reflexive rejection of “alternative” medicine.

    One article about intestinal permeability and auto immunity:

  2. Francl is completely off-topic. I don’t see chemophobia in the original article — only a concerned parent who was not willing to put her kid on life-long high-side-effect drugs. If I don’t want to live next to a nuclear power plant with my kids, will some physicist accuse me of nucleophobia? Seriously?

  3. > If I don’t want to live next to a nuclear power plant with my kids, will some physicist accuse me of nucleophobia?

    Given that more people died in the Fukushima evacuation than will ever die of the radiation release, and that just Germany’s increased coal consumption is killing >100 people a year, I don’t think ‘nucleophobia’ should be mocked as it’s a very real thing with fatal effects.

  4. Rachael is right that the “chemophobia” claim is a red herring. Without the artificial time pressure of the six week deadline, the mother could have sensibly tried the diet changes without the herbal medicine for six weeks, then added the herbal medicine if the diet changes alone didn’t work.

  5. Rachael makes the point that there is little research available on the efficacy of herbal medicines, which is wholly incorrect. Also, the difference between herbal and as you say ‘pharma’ chemicals are many and wide ranging. The ‘danger’ of herbal medicine is always overplayed as Rachael does here. Yes of course, there are plants that can kill, and/or make you feel very sick, but medicinal herbs are plants that have been used by humans and animals for a long time (longer than any ‘well tested’ drug) have a totally different risk profile to using ‘pharma’ chemicals.

  6. Lisa, I find your comment interesting as I in no way said herbal medicine is dangerous in my comment. I think we can agree that self administering foxglove (digitalis) can be dangerous, and many herbal medicines are extremely safe. The point I was trying to make is that their interactions with our bodies are because of the ways that chemicals interact with our bodies, be they from plants or from factories. I think western medicine neglects and ignores many safer and less side effect producing compounds because they have a bias against plant based substances.

    I do stand by my claim that relative to pharma compounds herbal medicines are seriously under-researched to the detriment of medicine. Because we have systematically defunded foundational medical research of all kinds and instead have almost exclusively private funded research in the US we close off many probably useful areas of therapy. Who is going to fund large scale research comparing HT2 receptor antagonists to whole ginger extractives? You can’t patent ginger, no one would profit from that research. So doctors will continue using HT2 receptor antagonists when it may very well be that the ginger is safer, more effective, and cheaper as well. Or not, we have no way of knowing in the current paradigm until the research is done.

    At any rate, I suspect you and I are on the same side, sorry if I offended you with my earlier comment.

  7. Rachael, I appreciate your comment in response. I too think that we probably agree on more points than we disagree, and why we are both reading this blog. However, to counter your ginger argument – there has been quite a bit of published research on ginger!

    I googled ‘H. Pylori and ginger’ and came up with this artical – top of the list!
    Admittedly, it is research on mongolian(?) gerbils but there are plenty more articles. So to agree again, it would be good to see more studies on humans 🙂

    Although I would like to see more research using herbal medicine, I think the methods used research pharma compounds are necessarily different. Pharma compounds are by definition ‘novel’ and therefore it is not only the efficacy that should be studied but the safety (i.e. characterisation of side effects). To study the efficacy of ginger to treat specific conditions could be much cheaper as safety is much less of an issue. (I am aware of ginger’s anti-platelet activity which needs to be considered when prescribing it for patients on blood thinning medication).

    Anyway, it isn’t going to happen anytime soon and I am happy to work with what we already have out there in terms of research, combined with the rich herbal medicine tradition, as a guide to my own personal experimentation.

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