
The Parasite Underground - ca98am79
http://www.nytimes.com/2016/06/19/magazine/the-parasite-underground.html?_r=0
======
theparanoid
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."

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

~~~
js2
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.

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

[http://www.medscape.com/viewarticle/853175](http://www.medscape.com/viewarticle/853175)

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

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

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kbenson
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.

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

~~~
teddyh
Tell that to someone suffering from IBS.

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55555
I did this, because I'm crazy. Ask me anything.

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

~~~
55555
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.

~~~
jonnathanson
_" 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.

~~~
geerlingguy
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.

~~~
Wingman4l7
Crohn's can hit early, too; the social hurdles of having a colostomy bag in
your 20s or 30s can be extremely daunting.

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univalent
Great Radiolab episode on this subject:
[http://www.radiolab.org/story/91951-an-update-on-
hookworms/](http://www.radiolab.org/story/91951-an-update-on-hookworms/)

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jerryhuang100
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.

~~~
jacobolus
> _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.

~~~
jerryhuang100
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.

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jdpedrie
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...](http://www.econtalk.org/archives/2014/03/velasquez-manof.html)

------
aufel
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.

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w1ntermute
The article author's book on the topic: [https://www.amazon.com/Epidemic-
Absence-Understanding-Allerg...](https://www.amazon.com/Epidemic-Absence-
Understanding-Allergies-Autoimmune/dp/1439199396)

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st3v3r
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.

------
middleclick
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?

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

[https://en.wikipedia.org/wiki/Helminthic_therapy#Research](https://en.wikipedia.org/wiki/Helminthic_therapy#Research)

~~~
refurb
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.

~~~
Houshalter
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.

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

~~~
Houshalter
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.

~~~
refurb
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.

~~~
cpncrunch
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...](http://www.sciencedirect.com/science/article/pii/S156899720700170X)

