Wednesday, June 16, 2010


I sometimes like to fall asleep listening to podcasts of NPR's This American Life. It's not that I find Ira and company or the material to be boring (usually quite the opposite) but I find that I will usually drift off by the end of one of these shows. If you're not familiar with This American Life, I highly recommend it. But on one recent such night, instead of drifting off, I was startled awake by a somewhat disturbing and entirely intriguing story with an MS connection.

It was Episode 404: Enemy Camp, and it originally aired in April 2010. Act 3 of the show tells the story of Jasper Lawrence, a guy afflicted with pretty severe allergies and asthma. Lawrence learns that people infected with hookworms tend to not have allergies or asthma or any other autoimmune diseases like MS or Crohn's Disease. So, naturally, Jasper decides to get himself infected.

Before I go further, let's take a look at this miracle cure:


Cute, eh? These little guys enter the human body through the soles of your feet and make their way to your intestines, their preferred homes, where they feast on your nutrients and your blood.

Back to Jasper. After discovering he couldn't purchase these critters anywhere, he hopped on a plane to Africa and spent some time walking around bare-footed in the latrines of various villages. To his delight, he did pick up some little friends and he did indeed find that he no longer suffered the effects of allergies and asthma that had plagued him for years. He then realized that he had a gold mine inside of him and as he puts it "literally crawling out of [his] feces!" So, he decides to harvest the worms from his own waste, clean them off and sell them to people with various autoimmune maladies so they too can experience hookworm happiness. Believe it or not, he does get dozens of takers. He's baffled, though, why he doesn't have people lining up at his door.

Well, Jasper, here are a few reasons. 1. See above picture. Sure, I can accept the whole thing about there being good bacteria in our guts that are helping us, while also knowing that generally bacteria is harmful to us. But something about half-inch wriggling worms with fangs that would make all those vampires so popular right now jealous is a bit harder to swallow.

The next issue. Have you ever seen pictures of African children with hugely distended abdomens? Hookworms were the cause. Our good friend Wikipedia also tells us that hookworms are "a leading cause of maternal and child morbidity in the developing countries of the tropics and subtropics" and that they cause "intellectual, cognitive and growth retardation, intrauterine growth retardation, prematurity, and low birth weight among newborns." In their defense, hookworms are not usually linked to mortality, and the most common symptom is anemia. In sum, there are significant causes for concern, I would think, before swallowing any of these magic little bugs.

And last, a very complicated issue that anyone with any incurable disease or condition is likely familiar with. There are lots of "miracle cures" out there for pretty much everything, and someone's neighbor/cousin/brother-in-law's vet's fiancée/etc. has been cured by one of them. Good-intentioned people then go on to suggest to us, the ill, that we simply try it too. Simple. Or not. As patients, we have to make a decision on where we stand on the whole Western medicine vs. Complementary and Alternative Therapy vs. experimental therapies divide. We have to decide whether to trust our doctors and follow their recommendations or to try anything and everything or to land somewhere in between. It's a tricky terrain to navigate, and this could easily turn into its own post (and probably one day will) . But wherever you fall on this spectrum, most people will agree that scientific testing is at least somewhat important for making decisions.

And, believe it or not, there are actually doctors and scientists studying the hookworm as a potential treatment. There are clinical trials wherein patients are infected with hookworms. And some results have been promising. You can read about a study focusing on MS here. The basic idea about how the hookworms work, by the way, is by putting a damper on the immune system. The thought is that it will lower the rate of relapses because of the immune system trickery the worms cause. But bottom line is, the testing process is not over, and many of us have chosen to trust in the process. The results of the MS-specific study linked earlier will be available fairly soon: 2011/2012.

After the initial airing of this show, the FDA swooped in and shut down Jasper's little lab. A truly passionate hookworm advocate, though, he decided to flee the country and continue to harvest and sell the offspring of the little critters that keep him from sneezing. On his website, you can read more about Helminthic Therapy, as I guess this is called, and even find out how you can try out some of the worms. (You'll need to travel outside the country to receive the treatment.) The website is:

I will certainly continue to follow this situation. I hate the idea of being infected with hookworms (REALLY hate it), but I have to admit that I find some of the research and the science compelling. If Helminthic Therapy becomes an approved therapy for MS at some point and my doctor recommends it, I would probably consider it. But sorry, Jasper, for now I'm staying away from anything crawling out of your feces.

So, hookworms. What do YOU think???

Saturday, June 12, 2010

my unlikely muse

In my family, we often refer to my MS as our uninvited or unwelcome guest. The disease is undeniably a part of our lives, and we would all certainly prefer that it wasn't. However, the disease has another, more positive, presence in my life: it's my muse. It is a source of inspiration and thoughts that probably never would have entered my life otherwise. I've always tended to bristle a bit when I hear people describe various diseases, maladies, or circumstances as great gifts. I still have a bit of a problem with that description, and if MS is a gift, it's one I'd like to return.

But I get it now. The MS itself is not a gift and is not something I'm grateful for. But the part of the MS that serves as a positive source of inspiration in my life is very much something I have gratitude for. I can't promise that this blog won't contain any of my laments or worries related to this disease, but I do promise that this blog is written under the guidance of that positive place I have found: MS as muse. I hope to "re-gift" my MS into a positive force in my life and the lives of others. Thanks for reading!