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The Parasite Underground

nytimes.com

115 pointsca98am7952 comments

The article buried the lead - "Coronado Biosciences did test Joel Weinstock’s pig whipworms. It ran the largest trials conducted to date, comprising 250 participants with Crohn’s disease. But in contrast to Weinstock’s earlier, smaller studies, which showed an almost miraculous curative effect in Crohn’s — 72 percent experienced remission — these studies showed no benefit at all."

That's an interesting data point, but it tells us little of the overall picture. There's so many different parasites, different diseases, and different possible causes of relief[1], that a single study of a single parasite for a single disease doesn't really disprove much beyond possibly that specific combination. Regardless, if we do find some benefit to parasites, I think the correct goal, if possible, is to understand the cause and replicate that without the negatives of the parasites themselves:

Loukas and his colleagues have received funding for a larger celiac trial, but he sees the field moving away from the use of live parasites, toward the identification of the molecules they secrete.

1: From a possible general taxing of the immune system relieving autoimmune dysfunction ranging from allergies to more threatening disorders, to intestinal parasites promoting intestinal wall mucus, to parasites promoting a specific type of bacteria which generates useful byproducts.

> From a possible general taxing of the immune system relieving autoimmune dysfunction

This matches my experience. I have Psoriasis, and the only time I don't have bloody little flakes of skin coming off my hands every day is when I have a cold or some other sort of sickness. So really anything that taxes my immune system is enough to give me some relief, it doesn't require parasites for me.

This is true, and definitely evidence supporting the null hypothesis (that an underground folk remedy doen't actually work, despite stories that layman find compelling).

But note that Crohn's and Ulcerative colitis (which Vic had) are different diseases. They are close enough related that about 10% of the time they can't be distinguished, but are pretty clearly distinguished statistically.

http://gastro.ucla.edu/body.cfm?id=169

Some of same treatments tend to be used for both, but the effectiveness is usually different between them. Given the lack of understanding of the underlying cause of the diseases, it's not clear how much failure of a treatment for one disease tells us about the other.

Actually, the placebo controlled trials are in line with the earlier "miraculous" studies. 50% of the people in the placebo arm experienced remission [1]. Also, studies have shown that the placebo effect in C.Dificile is up to 90% [2].

[1] http://onlinelibrary.wiley.com/doi/10.1111/pim.12175/full [2] http://jama.jamanetwork.com/article.aspx?articleid=1916296

Re [2], are we reading the same study? "Based on the available data regarding efficacy of FMT and relapse rates with standard antimicrobial therapy, we elected not to perform a placebo-controlled or active standard-treatment comparator trial."

Aside: I suffered a spell of C. Diff and wouldn't wish it on my worse enemy. It is by far the worst suffering I've ever had to endure.

Sorry, it looks like I pasted the wrong study. Here it is:

http://www.medscape.com/viewarticle/853175

(google "Mixed Results for Fecal Transplant in First Randomized Trial" to bypass the paywall).

Subtitle: A shadow network of patients are trying to treat their own debilitating diseases — by infecting themselves with gastrointestinal worms.

I wonder if at some point some of the things we've considered parasites and actively targeted will be considered symbiotes. We don't call out gut bacteria parasites, as there's continuing to be more and more evidence that it plays a strong role in how we function.

It makes sense to me that through tens (hundreds) of thousands of years, what initially began as a parasite may have adapted to be more symbiotic, or we might have adapted to make it so. If you can't eliminate a problem, find a way to make it work for you, or at least integrate it so it causes the least amount of problems.

I think it's a strong argument for why something like an artificial "sentinel" immune system would be such a dream. You could actively keep levels of symbiotic organisms in line, while flushing out undesirables. The same system would need to keep inevitable cancers from getting out of hand as well.

We don't call gut or skin bacteria parasites mostly because they don't hurt us.

Yes, but I think more important is the distinction that any harm they might do is outweighed by their benefits. Which is what I as alluding to regarding some parasites. We might find they provide a heretofore unknown benefit, and we might consider that parasite in a different light.

Tell that to someone suffering from IBS.

I did this, because I'm crazy. Ask me anything.

Did you really? What disease(s) were you treating with the helminths? What were the results? What previous treatments did you try?

I have an unknown autoimmune condition which manifests in sinus issues and gastrointestinal issues (clinically diagnosed with lymphocytic colitis, which is rare to the tune of 0.06% prevalence). Immunological/autoimmune pathways are clearly involved as mast cell stabilizers, antihistamines, and immunomodulators had a strong effect. After exhausting the resources of conventional medicine, I made a list of like 25 things to try that included everything in the world that made sense, ordered from least crazy to most crazy. And eventually I got to the bottom of the list. At that point the only reasons to not do it were pretty silly (shame, fear, etc) so I did it. I've done a lot of "crazy" things in my life that make a lot of rational sense.

What people don't understand is that people who do crazy stuff like this are not crazy. They are mostly doing what any reasonable logical person would do. They've just gotten to the bottom of the list.

> What were the results?

It had a marked significant positive effect on my immune system. A year after taking them I expelled them as (1) it's possible they had a side effect I wasn't enjoying (GI-related) and more importantly, (2) I had since discovered the Autoimmune Paleo Diet which is remarkably effective for managing a wide variety of autoimmune diseases. So the issues I once suffered from are much more manageable since discovering that diet and learning more about that..

Regarding (1), expelling the worms didn't fix the side effect, so it could have been unrelated. To this day I can't say for certain one way or the other.

Condolences about the condition - happily the diet works. I definitely agree. I don't see it as crazy at all, even though I admittedly haven't been in a similar position.

If you don't mind me asking, what else was at the bottom of your list?

Not OP you're replying to, but exponentially more expensive drugs with often scary side effects (one drug I was on intentionally weakens the immune system—and bad things can happen if you get sick), ultimately leading to the nuclear option of removing more and more of your gut to try to cut out affected areas.

"What people don't understand is that people who do crazy stuff like this are not crazy. They are mostly doing what any reasonable logical person would do. They've just gotten to the bottom of the list."

This is a very important point. Anyone who reads an article like this and concludes that the self-inoculating patients are "crazy" has probably never suffered from a serious, quality-of-life-threatening autoimmune condition. I haven't myself, but an ex of mine suffers from Crohn's Disease; when it's at its worst, it seems to inflict severe misery.

With Crohn's in particular, where one looks forward to potentially losing one's _entire_ gut (not just the large intestine)... The bottom of the list is populated with surgeries and colostomy bags.

Not the end of the world, but the calculated risk of certain parasitic infections vs the risk of all the other insanely expensive and much more side-effect-laden drugs isn't so illogical.

Crohn's can hit early, too; the social hurdles of having a colostomy bag in your 20s or 30s can be extremely daunting.

Can you give a brief overview of the diet you mention, and maybe link some resources on it? The website I found was basically un-navigatable.

The best resource is the book by Sarah Ballantyne. But a good overview can be found here http://www.thepaleomom.com/the-autoimmune-protocol

However I recommend reading the book, because the diet is pretty restrictive. I also recommend getting in touch with an open-minded doctor who you can show the diet to and they won't hand-wave over it.

Why?

I have an unknown autoimmune disease not sufficiently understood by the medical establishment (or anyone), and not well treated by more common treatments. The helminth thing (hookworm) didn't seem that risky seeing as how 50%+ of the developing world carries them asymptomatically, and they are trivial to expel.

Did it improve your condition? What was the strangest part? What precautions did you take and how did you record your data? How did you control for other things like mood, placebo effect etc.

See my other reply. Yes it is effective.

> What was the strangest part?

> How did you control for other things like mood, placebo effect etc.

Sometimes I would have bizarre thoughts about infecting other people against their will, as though the worms had migrated from my colon up through my body and into my brain and were controlling my thoughts in order to further spread their infection. But for all I know that could have just been a placebo effect. /s

Do you culture your own parasites? How do you collect the eggs and culture them?

I bought them using bitcoin from wormswell dot com. This was about 28 months ago. Buying helminths for self-infection from an anonymous and uncertified vendor seems crazy, but you can easily verify what you've done (after doing it) because every worm will cause a small raised bump and itch like mad. You can literally count them. I figured that the risk was mostly in getting a tiny vial of water, not in getting something more dangerous.

Any effects, positive or negative (besides the possible GI side effect mentioned down thread) on any other aspect of your health besides helping your autoimmune condition?

Great Radiolab episode on this subject: http://www.radiolab.org/story/91951-an-update-on-hookworms/

So maybe we should start to coin the word "parasitOME" as microbiome? I guess the interaction between [ human host <-> parasiitOME (parasites population) <-> parasites' microbiome <-> microbiome ] through immune responses would be the next frontier to be explored

> Two years’ worth of hookworms cost $2,500.

But at the same time I think that whole home-brew therapeutic parasites thing is kind of an overshoot (or scam?) Maybe just live in a third-world country for 2 weeks or 2 months, eating local street food, raw fruits, drinking local water would be easier and more effective to acquire 'necessary' parasites (along with parasites' cultivation conditions) to subdue such immune system 'imbalance'?

Also I don't believe those those home-brew parasites incubators discard or disinfect their extra batch of larvae / embryos or utensils by autoclave or other means - more likely it's just dumped in the toilets and circle to public sewage system. I would not be surprised to see some parasites outbreak in the near future if this is going to be a trend and some home-brew parasites incubators just happen to live near some water treatment plants or upstream some major dams.

In much of the developed world, sewage treatment is operated with the assumption that people are regularly putting pathogens in the sewage via their feces.

u will be surprised how often large outbreak of parasites infections there are in "developed world's" public water supply: Sweden [1], US [2]. CDC even has a web page set up for Drinking Water-associated Disease Surveillance.

[1] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3966397/

[2] https://en.wikipedia.org/w/index.php?title=Water_supply&sect...

> Maybe just live in a third-world country for 2 weeks or 2 months, eating local street food, raw fruits, drinking local water would be easier and more effective to acquire 'necessary' parasites (along with parasites' cultivation conditions) to subdue such immune system 'imbalance'?

This is also a good way to make yourself really really sick. You can end up with hepatitis A, amoebic dysentery, cholera, typhoid, etc.

Or even if it’s just giardia and cryptosporidium (I assume these are among the “necessary parasites”?) folks who are immune-comporomised can end up in real danger.

autoimmune diseases and immunodeficiency are two pretty different things. also the infections you listed here pretty much could be prevented or with specific treatments available. MS & celiac disease don't.

The author of this article spoke to Russ Roberts about this topic on EconTalk[1] a couple of years ago.

[1] http://www.econtalk.org/archives/2014/03/velasquez-manof.htm...

Joining these groups is rather trivial. After reading them for about 6-8 months, here's my synopsis.

May be useful for Chron's/IBD based on user responses. No actual success in any clinical trials -- members always cite meaningless murine studies. Recently "study" they are citing is just a collection of user-reported results tabulated in a pretty way. Extraordinarily expensive if you live in the USA -- only sold for 3K+ by AIT. Plenty of parents infecting children for any and all autoimmune diseases. Also infecting children for autism (???). Very few members bother to report failure, they just disappear from the forums altogether.

Most members are practitioners of extreme alternative medicine, i.e. homeopathy, leeching, anti-EMF, other ungodly pseudo-scientific procedures I've only heard about from there. Anti-vaxx, everything.

Quite a few of the success stories that are touted are by individuals treating illnesses that are not recognized by modern medicine or very difficult to define. CFS, fibromyalgia, "total food intolerance", chronic lyme, multiple chemical sensitivities, you get the picture. (some of those are not like the others, my apologies if I offend anyone there)

Overall, a very dangerous community with very, very bad advice. Sure, there might be something to autoimmune disorders and parasites, but these communities are spreading dangerous bullshit at best and preying on very desperate people.

The article author's book on the topic: https://www.amazon.com/Epidemic-Absence-Understanding-Allerg...

As someone with Crohn's, I've wanted to try this since I heard about it. The problem is, with medication, my disease has been in remission for quite a while, with only an occasional flare up. So I feel no reason to mess with it.

Very interesting. Can someone comment if there is actual science behind it or the two cases the article gives can be explained by other non-scientific factors?

It's plausible, but so far no clinical trials have been done AFAIK.

https://en.wikipedia.org/wiki/Helminthic_therapy#Research

As someone else mentioned, Coronado Biosciences conducted a large, double-blinded study using pig whipworms for ulcerative colitis.

There was no difference between the treatment and placebo arms.

More info here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4374592/

It looks like it was for Crohn's.

What's most interesting is that the placebo was remarkably effective. That seems hard to believe and maybe it is a fluke.

Anyway the article said the study hasn't been published so maybe there are more details.

No that is actually a pretty typical placebo response for diarrhea or bowel movements. See my other comment here for specific details.

Well it's still the most interesting part to me. It's crazy that a medical condition as objective as diarrhea or stomach pain can be so heavily influenced by psychology.

Yes it is fascinating. It's well established that the stress system modulates bowel motility (via crh) and absorption (via cortisol).

Don't forget that's it's common for autoimmune diseases to wax and wane. Even if a patients get no therapy at all, the disease often gets better for a short period of time.

Also, stress affects autoimmunity [1], so it's possible that the placebo effect modulated the autoimmune disease itself.

[1] http://www.sciencedirect.com/science/article/pii/S1568997207...

"That seems hard to believe and maybe it is a fluke"

Pun intended?

Carl Zimmer's very interesting book Parasite Rex (though now over a decade and a half old) cites some studies on using worms to treat Crohn's disease and googling around yields this a more recent paper published in Science about studies done on mice [1].

[1] Layperson Summary - http://www.sciencemag.org/news/2016/04/parasitic-worms-may-p...

[2] Actual Article - http://science.sciencemag.org/content/352/6285/608

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