Science writer Leah Shaffer discovers an interesting way to manage her chronic illness -- hookworms.
Leah Shaffer is a freelance science writer based in St. Louis whose stories have appeared in Wired, The Atlantic and Discover magazines. She writes about biology, medicine, and the weird critters inside and outside the human body. You can read about her complaints and schemes on Twitter as @LeahabShaffer.
This story originally aired on Mar. 2, 2018, in an episode titled “Innovation”.
Story Transcript
This January I received a very special package in the mail. In that package was a little dropper. The dropper contained liquid. In the liquid were ten parasitic worm larva called hookworms.
So I dropped that liquid into a bandage and I slapped that bandage on my arm, and I waited a minute and it started to itch. That meant those little hookworms, those baby worms were burrowing into my skin and about to make the journey through my body to set up shop in my small intestine. I was super excited about this.
This really impulsive, stupid, kind of crazy act was more fun than the status quo. And the status quo was doctors’ appointments, uncertainty and bleeding.
So let me backtrack a bit. A couple of years ago I was diagnosed with inflammatory bowel disease, a type of that called ulcerative colitis. What happens is your own immune system attacks the colon, the lining and you get ulcers in there and you bleed. People get diarrhea and abdominal pain.
What I think happened is that both my husband and I had gotten terrible food poisoning. He got better but I didn’t. Now, this is something that people can have as a mutation and it can be triggered, it can be awakened by an infection, and this is probably the worst infection I'd ever had.
So I started to see blood in my stool, which is really disturbing. I went to the doctor and he says, “Time to get a colonoscopy,” which I did at age 35 and that sucked. Then the doctor, the gastroenterologist said, “Sorry, you've got colitis.”
“Okay. Fix me. Give me medicine. Make me better.”
The problem is we don’t have great medicine for autoimmune problems. It can help some people, for sure, but not everybody. It seemed like the medicine I took wasn’t really helping me much. I was bleeding every day. I had to go to the bathroom it seemed like a billion times a day. I didn’t really even want to eat because it seemed like the food just went out of me right away.
Of course I go to the dark side. I have anxiety. And when I feel like my life is out of control I get really, really anxious and I start thinking dark thoughts like, “This is the end. I’m never gonna be able to play with my kids again. I don’t even know if I'll be there for my kids.” The anxiety is almost the worst part.
Fortunately, I also have another side to my personality - an impatient control freak. And that impatient control freak grabbed the wheel, said, “Shut up, Anxiety. Sit down. We’re in charge and we’re gonna fix this. We’re gonna make it right. We don’t have a medical degree but whatever. We know how to use Google scholar.”
“Got it.”
Now, I’m also a science writer so I write about all sorts of things, weird biology. So a couple of years ago, I had written a story about people using parasitic worms for their autoimmune problems. Why would they do that? Why would I do that?
It ties into something called the Hygiene Hypothesis or the Old Friends Hypothesis. The idea is that for all of evolutionary history of humans, we have been riddled with parasites and fungus and viruses and microbes and dirt in all our crevices and we’re gross. We’re just gross animals. These creatures lived in us and some of those killed us. Yeah, those creatures did kill us sometimes, but what didn’t kill us made us stronger.
The two of us, the creatures and our immune system, they went back and forth. The immune system started to build weapons of mass destruction trying to get rid of hundreds of parasites and the parasites did the opposite. They went, “Kumbaya.” They said, “No, let’s just chill. It’s great. Let’s sing some sleepy lullabies to the guard dogs.” And they got really good at kind of putting out these chemicals that were like lullabies.
This went on and on for thousands and thousands and thousands of years and then we have modern society, and that’s great. We live longer. We have sanitation and we have processed food that is safe to eat. And our children live past childhood. That is really important. But there's a downside and that is skyrocketing rates of autoimmunity.
We've noticed that in high-income countries we have all these problems like arthritis or so many allergies or lupus or multiple sclerosis or inflammatory bowel disease, inflammation. We are rich and healthy but our immune system is going haywire and that doesn’t seem to happen in the poor countries that haven't quite kept the right sanitations. The idea is that we’re missing our old friends.
Some of our old friends did a good job of keeping our immune system in check and so scientists have tested this theory. They have actually given people parasites, people who have inflammatory bowel disease. As it turned out, it’s pretty safe. Even better, it seemed to help people. The results were really promising.
When you're a science writer you read a lot of studies and you come across that phrase a lot, “Results are promising, more research needed”. That’s great but the “more research” part is the part where it all stops because more research costs a lot of money.
Usually, you get a lot of money from drug companies and drug companies don’t really want to be in the business of creating parasite zoos. It’s not profitable. So the research sat, except for a couple of patients who thought in a similar way that I did. “I guess we’ll fix it since no one else will.”
And these patients all came together on a Facebook page, of course, called Helminth Therapy. Helminth is just another word for a parasitic worm. And they pooled all their knowledge and, for simplicity’s sake, I’m just going to call it Worm Club.
So let me just pause a second and give you my don’t-try-this-at-home speech. If you're all sitting out there and thinking, “That lady is crazy,” I totally agree with you. You should be skeptical. You should always be skeptical in life. Be skeptical of your doctors. Ask questions. And always be skeptical of the person on stage saying, “Look at this miracle cure I've got for you.” So please, continue to be skeptical.
So Worm Club. The thing is I know I’m standing on stage wearing like a dress with neurons that glow in the dark but I’m a rational person. I really am. I believe in science. I believe in the system we have of making sure science is safe and medicine is safe.
So I've got this rational side but I also have this impulsive, impatient side. I have no tolerance for lack of control. And these two sides had to have a conversation.
So rationally it says, “This is not good. You're going to have to get parasites from people off the internet. We don’t know where those people have been. We don’t know where those parasites have been. Just stick to the FDA-approved medicine.”
Then irrationally it says, “Oh, yeah. Where has that gotten me? Nowhere. And then they're going to say, ‘Well, try this other medication but it’s got some scary side effects,’ and that won’t work. And then they'll say, ‘Well, try this other medication. It’s got even scarier side effects,’ and that won’t work. And then they're just gonna say, ‘I guess we’ll have to take out your colon. Sorry.’ That is crazy. That is irrational.”
We go back and forth and then suddenly my own gut pipes in and says, “You guys, shut up. I’m bleeding and suffering. Screw the medical establishment.”
So it’s been decided. I’m joining Worm Club.
The first rule of Worm Club is you don’t talk about where you get your worms. So I’m not violating that, I’m not violating it. We’re a little hush-hush because the FDA, shockingly, the FDA does not want people buying worms off the internet from strangers. They're a little worried about that. So if a package comes in to customs and it says in big letters “Worms for Fun and Profit” they're probably going to confiscate that.
So we don’t offer too many details about the providers but when you go on the Worm Page it provides a list of providers and then they say it’s up to you to get in contact with them.
So I get in contact with a provider and I start with a type of parasite called the pig whipworm. Now, this was the one that was studied the most because it’s suited for pigs. It can’t reproduce in humans so they have more kind of control over it. So you have to take these pig whipworm eggs every two weeks. That’s how it works.
So I ordered them. They arrived in a little box with these little shot glasses of salty liquid containing the eggs. So every two weeks I take my shot -- L’Chaim -- I take a shot and then I do this for six months. It takes a long time supposedly for it to work. And you know what? Nothing happened. I didn’t feel any weird side effects, like I had an infection, but my disease was still there. I was still bleeding.
At that point I decided to make some other changes. I changed my diet. I started taking a different type of antidepressant that helped with inflammation, and that helped. I didn’t have to go to the bathroom so many times a day but I was still bleeding. And I wanted perfection.
Now, the good news is there's multiple flavors of worms you can choose from. If the pig whipworms don’t work, let’s go to the classic. Cult classic is hookworms. Hookworms they would naturally get in people. We would walk in work that’s been contaminated with someone else’s poop and then they’d burrow into you and that’s the classic way to get hookworms. But for these, basically these providers they filter the hookworms through soil and then put it in like a sterile liquid. That was what I used.
Okay. We’re back to January. The worms are in my arm. What happens next? Almost instantly I start itching all over and break out in hives. I’m serious. This happened. My arms started itching and puff up. My neck and the tops of my toes and my legs, I’m itching like crazy. And I’m not someone who’s ever had skin allergies or any problems in my skin.
“Oh, my God. What did I do? What did I do? Oh, my God.”
So I check in with Worm Club and they're like, “Yeah, yeah, yeah. You know, that can happen. Your immune system is gonna freak out for a little bit when it meets the worms and eventually they're gonna reach a peace accord. Until that happens people get kind of crazy side effects. They can get itchy. Their diarrhea can get worse. They might feel achy and then brain fog,” something that they call the worm flu.
“All sorts of things can happen but the good news is it will pass. Once they reach this agreement you won’t get these symptoms ever again.”
“Okay, great. This will pass. So how long is it gonna take before it passes?”
“Well, it’s different for everyone. It’s really different. It could last a couple of weeks or maybe months or six months or maybe a year or more. We don’t know. Everybody’s different.”
And this is the consistent message from Worm Club. They try to be truthful. They're not like, “This is a miracle drug.” They're saying, “Everybody’s different. Everybody’s got a different immune system. It is different for everyone.”
So am I going to itch for a year? No. I itch for two weeks. That’s pretty good. It was a crazy two weeks but it just cleared up, just like that.
Then something else happened a few weeks later. I become normal, like really normal. No more blood. My immune system is well-oiled machine. I feel good. That’s awesome. Thank you.
I didn’t want to believe it. I had no expectations but I felt like, “Am I cured?” No. I’m not cured. A few months later the symptoms returned.
Okay, what’s going on? I check in with Worm Club.
Yes, some people can keep their colony for years. Other people have to add more worms every few months because, as it turns out, my body is really good at kicking them out. And you need to maintain a certain size of colony to help your symptoms because they're sitting there and they're basically exuding these chemicals that help you I guess help calm down the immune system, so I need to get more worms.
I get more worms and, sure enough, the symptoms are gone for another four months.
That brings us to September. Symptoms are back. I seem to have a pattern here. It seems like every three or four months, I have to add some more. And that’s fine because in those three to four months I’m totally normal. If this pattern holds I have a medicine for life, a medicine with no side effects. It makes me feel good.
And I've checked in with a couple of people who have done this and there's some people have been doing this more than ten years and they're still good. Nothing crazy came out of it. They just maintain their colony and their symptoms are not there.
So I’m really happy about this for multiple reasons. Obviously, I feel good. I feel normal, and that’s great. Secondly, I feel like I was rewarded for bad behavior. Like I totally broke the rules. I must be smarter than the doctors. No, no. I’m not smarter than the doctors.
I talk to my doctor about this. You always need to talk to them and he was kind of like, “Eh…” he'd kind of heard of the research but he was like, “Please don’t buy from strangers.” And that’s reasonable. I expected that from a doctor. That’s what a doctor has to do. Do no harm. And if someone’s like, “Well, I totally found a guy on the internet. He just like opened up his coat, like ‘parasites for sale’ and that’s great.”
So yeah, doctors are kind of like, “Okay, just please, please be careful.”
But then I talk to other scientists and doctors and they're all really excited about it. Some people are trying to work on a pill based on these chemicals. And I talked to them and they said, “You know, I can’t officially tell you to do this, but if I was suffering like you were I would do it too.”
So I wasn’t just meeting crazy, I have something that works. I know it’s gross. I know it’s super gross. But the world, being alive is gross, you guys. Being alive is super gross. We’re oozing. The earth is like this oozing, giant thing and everybody is gross and we all have gross feelings and life is gross. That’s just how we are.
It would help as I used to think of my body as like a machine and if something broke that was it. But really, we’re not machines. We’re ecosystems. We’re not one creature but many. We’re basically all just trying to survive. Thank you.