Archive for August, 2010

A Wormy Family Story

So my mother is from central america, Guatemala, to be precise. Her father was extremely poor growing up. One of the mythic stories in my family is that he didn’t own a pair of shoes until he was 11 years old. Being a moist, humid, tropical country with desperate poverty, Guatemala has one of the highest rates of helminth infection in latin america. I would venture to say that there is an almost 100% likelihood that mi abuelito (grandfather) was infected with intestinal worms, perhaps even with a heavy load, for at least most of his childhood and adolescence.

Even the specific helminth I’m using for UC, human whipworm, continues to be widespread in Guatemala, such as is evident from this 1996 study that found 81% of children in a rural Guatemalan town were infected with Trichuris Trichiura (human whipworm).

I can’t help but muse that I’ve happily paid $3,000 to infect myself with an organism when my grandfather couldn’t even afford a pair of shoes to ward off hookworm infection (aka ‘ground itch’), or other maladies. I wish he were alive today to hear the story.

Another interesting story. My Guatemalan aunt’s (by marriage) mother grew up in the countryside, poor, as a typical mixed-indigenous woman, cooking, carrying, mending, raising a family. Clearly she came across her fair share of parasites and other organisms. She is now in her mid-90’s, and although she suffers from terrible dementia, and is unable to communicate, her body is in impeccable shape. My uncle describes it like this; “It’s almost as if her body has taken on a life of its own, all her bodily functions are fine, no cancer, nothing wrong at all.” She did not grow up with immunizations (I’m not against them!), cans of lysol, antibacterial soap, vitamins or supplements, or western medicine in general. Granted, she also lived a life of hard work far removed from our couch-potato lifestyles of leisure.

(my grandfather, who remained very healthy and active throughout his life, eventually died in his 70’s from problems related to smoking)

On top of all this, one of the anomalies that stood in contradiction to the hygiene hypothesis was that even in the developing world there is a recent, noticeable rise in autoimmune diseases. However, to help explain this, there was a study done in the past few years that looked at autoimmune diseases in Venezuela. Like many countries in latin america, the big capital cities tend to be segregated between the slums of the poor, and the gated, exclusive communities of the rich (and usually protected with armed guards). If I remember right, the study found a huge disparity between autoimmune rates in the slums vs. the gated communities. Basically virtually no rates of autoimmune problems among the poor, while in the gated, highly hygienic communities with all the trappings of modern life, found significant rates of the whole gamut of autoimmune problems–asthma, allergies, IBD, etc.

*If anybody knows of this study, please send me a link, as this is from memory and I’m not sure it’s totally correct.

Oh, and everyone should travel to Guatemala (not to acquire parasites!) at least some point in their lives. It’s a place of stunning beauty and stark contrasts, both in the people and land.

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As for my symptoms: still very good, solid bowels, once a day, still some pain when passing a BM, but not as bad as at first.

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Family carrying wood down a mountain. Everyone carries what they can. One of my favorites from last trip.

Rural family. Everyone carries what they can, down the mountain. One of my favorites from last trip.

One of the many beautiful women of Guate, taken at a natural steam-bath house


Need a microscope! (and yay new GI)

So I’m trying to get my hands on a used microscope so I can start doing McMaster egg counts, so I can at least track the egg output of the helminths. Anybody have any scientist friends? Fellow helminth-IBD-blogger-comrade Debora has been doing her own McMaster counts for some time now, and has posted how to do DIY helminth egg counts (she’s using hookworm for Crohn’s)

http://waitingforthecure.com/I/2009/05/29/did-my-first-mcmaster-egg-count/

While this would not necessarily tell me exactly how many worms “took,” it would at least allow me to do like a monthly egg count to track egg production, which I think would give me some idea if the population fluctuates, and would be useful in the future for if/when I add in more whipworm, and possible hookworm.

And update from last post: I finally met with my new GI who was very nice, quite familiar with helminthic therapy, and didnt recoil in horror like my last GI did when I mentioned the word helminths. She talked briefly about Weinstock and his “pioneering work” on helminthis and IBD, with a look of envy. A very big relief for me.


Fingers crossed for new GI doc

The importance of a good doctor-patient relationship is central to successful treatment of any malady, be it the common cold, depression, or a chronic disease.

Fellow IBD-helminth-blogger-comrade Luke from the great blog LukEcology recently wrote a nice post about this, Your Doctor and You, check it out.

Truthfully, I’ve never liked my GI. I was kid when I first was put in his hands, fresh out of my first year in college, a scared shitless (literally) kid who had been sick for months and had lost 30 pounds and was willing to do anything for relief and answers. My GI was conventional, seemed friendly enough at first. However, as I came to terms with the disease, my next turn was the research the hell out of it, and I started asking questions. He was always nice, but every visit, I came with questions, curiosities, and really he just didnt want to engage in conversation with me about anything beyond my immediate symptoms. As far as he was concerned, as long as I wasnt having blood in my bowels, I was fine, and needed to “accept” that this was how my new normal would be.

Last year, when I had learned of helminthic therapy and came to his office with dozens of articles, well informed, and ready to ask him all about it, he completely blew me off. At the very mention of it, he just cut me off with a “oh yeah, they’re doing that stuff on rats for allergy,” then when I showed him some human trial studies I had printed out, he was surprised and probably embarrassed, stood up to shake my hand and leave the office and muttered something like “uh yeah I’ve got stacks of journals in my office I haven’t gone through yet.” As I left he said something like “uh yeah I’ll look into that for you,” but clearly he just wanted me to leave so he could have lunch.

In any case, I’m meeting with a new GI tomorrow outside of Boston, and I’m excited as I picked her because I “heard” from a friend on the yahoo boards that she’s familiar with H therapy, is very friendly, and she’s connected to Tufts University, which is where much of the research on pig whipworm therapy is being done.

I admit, I’m also nervous about being rejected. I really need to find a GI who is willing to work with me through this therapy, right now I’m just under the care of a PCP who is clueless about IBD but at least vaguely supportive. This disease is hard enough, and this therapy is so ridden with unknowns, that I simply cant do it on my own. Marc at AIT has been wonderful, but he’s in England, and cannot function as my GI in any real capacity.

Wish me and my little comrades luck.


Symptom update

Just a quick symptom update. Bowels are still coming once a day, which is a great sign. I would say, on an average scale of 1 being diarrhea and 10 being totally solid, normal BMs, my bowels have been consistently 7 or 8s, even many 9s. Still no mucus at all, another great sign. Plus I’ve been eating everything, including some diary, corn chips, fresh and un-peeled veggies, and others which I previously avoided which are probably challenges to my intestines.

The one big mystery for me is that I’m still having some mild allergic-y things going on, a little bit of wheezing/tightness while breathing sometimes (I have not been diagnosed with asthma), still some slight skin reaction, nothing too concerning but I’m curious as to how the worms may play into this.

Again, I want to post the disclaimer that I’m under some serious “life stress” as a graduate student about to start teaching my first course in the Fall, among continuing to struggle with generalized anxiety. So its really impossible for me to separate what could be related to stress/anxiety and what is not. The heat and humidity have also been generally unbearable this summer (record breaking temps here in New England), and this seems to exacerbate everything.


The Problem of Quantification

One of the frustrating things about using human whipworm is that I’m not able to quantify how many “survived” from inoculation. Best guesses are 10% which should put me at roughly 100 worms. But really its very far from an exact science. It’s possible that none survived, that the improvements I’ve seen in my bowels are merely coincidental (my IBD has always had periods of worse and better symptoms), I dont believe this is the case, but it is a possibility. Only with time I will slowly be able to have a better idea, and hopefully once I know more about how many worms might be alive. For those using hookworm, having at least a rough idea of how many worms they have is far easier as one inoculates with larvae and most are assumed to survive.

In 3 more months I’ll be sending Marc (Dr. of AIT) some stool for an egg analysis, which will tell me some information, but will not be able to quantify exactly either. Anybody out there using whipworm have any experience about this? I do know that one can “put a scope up there” (i.e. colonoscopy, to which I’m no stranger) and literally have a GI try to count them, but this is expensive and invasive, so I would prefer another method.

I’ll be starting with a new GI soon, who should be able (hopefully) to help me deal with some of the questions about measuring the efficacy of this therapy.