Helmithic Ponderings…and Ending Suffering

This morning a very good article on helminths appeared on the science website, Undark, “Old Friends:  The Promise of Parasitic Worms.”[i]  My main complaint:  like so many other articles on the subject, it left the impression that there’s just not all that much science behind the idea of macrobiome reconstitution.  It correctly points out that “…large-scale research into helminth therapy has been slow, sparse, and marred by setbacks.”  On the other hand, it did not discuss a single specific article on the known physiological effects of helminths, only vaguely referring to “…an uncanny ability to manipulate human immune system responses.”

I talk a little more about more specifics in my blog post, The Human “Omes,” and will certainly address this in greater detail in the future.

The main thought though that struck me as I read was how tragically slow science is when it comes to alleviating human suffering.  Yes, of course it takes time to do research -but the truth is, ultimately, it’s not time that’s the problem. It all comes back to money. The anecdotal evidence supporting the use of helminths to balance the biome and cool down the hyper-inflamed immune system is beyond compelling and has plenty of science to back up the theory…and yet, one failed (and controversial) trial of one helminth was all it took to drive away all commercial interest in these organisms.

Leah Shaffer, the author of this article, correctly points out that “…a growing number of desperate patients are proving unwilling to wait for more positive results.”  And that is what I, personally, always come back to in the end.  That is:  sometimes logic dictates that we – the suffering – move ahead of science.  The options for those suffering from chronic autoimmune and inflammatory illnesses are unbelievably limited, and the available pharmaceutical options often have serious and severe side effects. (Ms. Shaffer strongly makes this point.)   The person suffering from the unremitting pain and misery of inflammatory bowel disease, or the debilitating effects of multiple sclerosis, or the parent watching their child with autism scream – we, the suffering, do not have the time to wait for that “scientific someday.”

When my son was diagnosed with autism, I turned to the mainstream medical community begging for help.  Alex was so sick – so unbelievably sick.  It’s a terrible moment, that day you realize that there is no one out there to help you.  The 21^st anniversary of Alex’s diagnosis is now 2 ½ months away.  And the fact is, there is STILL no science out there to help.  Some theoretical progress has been made looking into the causes of autism.  But in terms of actual TREATMENTS that can help my son to stop screaming?  21 years later, we are not an inch closer. There are literally no new on-label treatments in over 2 decades.

We, who suffer day in, day out, need a way to end as much of that suffering as possible NOW.  Not in some distant, hypothetical future.

I did not blindly start to use helminths 10 years ago.  I read every single article in the scientific literature over the course of years.  I relied upon what science we had at that moment to make an educated decision for myself and my family.  My all-time favorite quote – which best expresses my mantra from the day my son was diagnosed – came from Dr. Martha Herbert, an eminent neurologist at Massachusetts General/Hospital, in a talk I saw her give about 15 years ago,  “When faced with prolonged [scientific] uncertainty, use your best judgement.”

Ms. Shaffer is undoubtedly correct when she writes, “I also have seen nothing to convince me that I or anyone will find parasitic worms at the local drugstore anytime soon.”  However, I think that depends on your definition of soon. At some point,  in the not-very –distant future, helminths will become far more mainstream because, with the growing rates of autoimmunity and chronic inflammatory illness across the world, there will be no other option.  We, the suffering, won’t wait.

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[i] http://undark.org/article/helminths-ibs-worm-parasite-auto-immune/