lukECOLOGY

Sticker Shock

2011-11-17T20:09:00.000-06:00

Those that begin researching hookworms as an alternative treatment often respond one of two ways in response to the price. At around $3000 per treatment, some think the price is way too high. How could one treatment cost that much?! Then there are others of us who have been through multiple treatments for Crohn's. Three grand for a dose that can last up to 3 years is an incredible deal when you consider what Remicade cost. In only 3 infusions, I have already paid over $3000 - and that's after my insurance covered their part! Every two months I have to go back for another two hour infusion of the immune system-destroying drug and pay another huge sum of money.

My fourth dose of Remicade will be in a couple of weeks. Even though I seem to have less pain in my side, I still have to take a daily Immodium to avoid the bathroom more than 3 or 4 times a day. I also now enjoy a perpetually runny nose, chronic cough, arthritis, and severe headaches at least 3 times a week. Yay for Remicade.

As soon as I my doctor says the intestinal inflammation is gone, you can bet I'll be planning another trip out of the country for more hookworms...

A Different Approach to Crohn's

2011-10-27T08:45:00.000-05:00

I know many of you read this blog because you are looking for other options to treat your IBD. My friend Reid Kimball, a fellow Crohn's sufferer and uber health crusader, recently posted his strategy for dealing with Crohn's; the "5-R Framework."

According to his website, http://crohnsend.com/2011/10/announcing-new-framework/ , the 5 R's stand for:

(1) Remove – Remove the chemicals, food, and toxins in your environment that may be inflaming your intestines, killing your beneficial microbiota, feeding your pathogenic microbiota and triggering your immune system once they enter your blood.
(2) Replace – Replace your diet with healthy fats, nutrient dense and toxin free food. Use supplements to fix deficiencies until no longer needed.
(3) Reinoculate – Reinoculate your gut ecology with beneficial microbial probiotics that have many benefits including to help regulate and restore balance to your immune system. These probiotics includes yeast, bacteria and helminths (microscopic parasites).
(4) Repair – Repair damage to your intestines using supplements and sleep at least 8 to 9 hours every night to aid your body in its repairing functions.
(5) Reconnect – Reconnect is one I decided to add to the existing and well established four above. This means to reconnect with your body, mind and spirit.

Well done, Reid! You inspire me to live a healthier life!

Why yes, I am still alive.

2011-10-18T22:40:00.000-05:00

Here's the short version: Nothing interesting is happening in terms of my Crohn's. I had my third Remicade infusion last week and the bone and muscle aches weren't as bad, though still there. I find myself getting tired easily. Fortunately, I can take midday naps...since I left my job as a career coach/job developer at the end of September. Which much excitement, I've started my own photography business and found my time being absorbed by that venture - hence the decrease in blogging. I'm hoping the flexibility in this job will be a better fit for my ongoing health issues. I'm still writing when I have time or need an escape to the world of science fiction, but for now my life is mostly consumed by photography and operating a small business. I'm happy with that arrangement.

I'll probably have a visit to my gastro doc soon to evaluate the Remicade's effectiveness. But until then, all I can do is wait; or distract myself with work.

Pressing On

2011-09-11T21:10:00.000-05:00

In response to my call about the onset of new symptoms after starting on Remicade, the doctor's office told me to take some Tylenol. If your smoke detector goes off in your house, would you be fine with the Fire Department telling you just to cover your ears?

I had my second infusion last Wednesday and felt extremely tired the next day. I've also noticed the joint and muscle pain seems to be at its worst whenever I do something physical - as simple as mowing the grass or walking the dogs. Within two hours of these kinds of activities, I can expect the aching to begin.

Is it working? I suppose I have less pain in my lower right side. Of course, I could just be distracted from the pain everywhere else. I have noticed that within 12 hours of both infusions, I found myself on a toilet - in spite of taking Imodium. My next infusion is in October, so if I can make it until then, I'll know if this is working or not. If it works, I'm adding more hookworms ASAP! With lymphoma as a possible side effect, I don't want to use Remicade any longer than I have to.

{sigh}

2011-08-31T09:39:00.000-05:00

I had my first Remicade infusion on August 22nd. Beginning the past Monday, I noticed muscle aches and a soreness starting to creep in. Today, I feel like a very large person used a rolling pin on my arms while I was sleeping. My joints ache and I keep getting these random shots of pain all over my body. My arms and legs also feel heavier. I don't think this is normal - I hope this is not normal. I'm waiting for my doctor to call me back today to get an answer. My dilemma is that I need to knock out the ulcers in my small intestines quickly. In six weeks, I'll know if the Remicade is working. If that's the case, there might be enough reduction of the inflammation that another dose of hookworms would take. However, if I'm having this full-body pain only a week after an infusion, does this mean my body has already rejected the Remicade?

A Time to Regroup

2011-08-02T00:45:00.000-05:00

I received the results of my pill cam procedure a couple of weeks ago, but am only now sharing them because I've been doing a mental regroup. I've mentioned before that one of the hardest parts of dealing with Crohn's Disease is enduring the defeats that always seem to chase away the hard-won victories. It's as if the campfire you've finally gotten started is suddenly snuffed out by an icy blast of air, leaving you shivering and in the dark.

I suppose the good news in all of this is that I can't say definitively that the hookworms aren't still there. The pill cam battery died before it ever reached the end of my small intestines, where the hookworms likely would have been. Unfortunately, what the camera did show was lots of ulcers throughout my small intestines which means my immune system is back in overdrive and reeking havoc on my body. The amount of inflammation in my gut was enough to make the pill cam take longer to digest than normal, leading to the battery dying too soon.

I still believe in helminthic therapy. There was enough proof before I started using hookworms to convince me and in the past two years, the research done by others a whole lot smarter than me has continued to pile up. If you placed those who have tried helminthic therapy on a spectrum, I think that it would be safe to say that I'm no where near the middle. While I know people who have had excellent and quick results using hookworms, I have only found short-lived relief. So rather than say I am unresponsive to the positive effects of hookworms, I believe at this time it's more accurate to say I have not yet achieved a therapeutic dose with hookworms.

But before I can consider making any adjustments to my hookworm population, I have to contain the ulcers and small strictures that are forming in my gut. From the pill camera images that I saw, I know that if I don't do something quickly, I'll be back in the hospital for another small bowel resection. I'm willing to do anything to avoid that again.

A Quick Update

2011-07-06T22:31:00.000-05:00

The pill camera procedure was painless. The worst part about it, besides the prep the night before, was having to wear the belt and bag in the 100 degree Texas heat. So as far as procedures go, this one is very easy. The pill was a little larger than a multi-vitamin, so it went down quite easy. They said I will have about 54,000 images by next week at the latest. As I was given all of the equipment, I told the nurse/technician what she might see...hookworms. Surprisingly, she had heard of helminthic therapy when it was mentioned at a recent conference! She seemed very eager to be able to see the hookworms in action.

Now I just have to find something to do with 54,000 images. I'm thinking I could do a large mosaic self-portrait. I know just the place to hang it in the dining room.

The Film Debut of My Digestive System

2011-06-26T22:27:00.000-05:00

On Wednesday, I have my first pill cam procedure. The prep for it will be the standard cleansing one might get before a colonoscopy. (yay.) Once I've swallowed the pill, I have to find something to do for 8 hours while the tiny camera transmits images to a hard drive buckled to my hip. At the end of the day, I'll return the hard drive (but not the pill camera - thankfully no recycling) to the doc and he'll download all of the images that will allow him to see everything from entrance to exit. This should provide the best proof of whether or not I have any other inflammation in my gut and hopefully a clear picture of my hookworm population.

Five Years Later

2011-06-06T22:44:00.000-05:00

The date was June 6, 2006 and it was the first heard time I had heard of the dread disease that now influences every decision I make in my life. My primary care physician told me that the fatigue, fevers, daily vomiting, diarrhea, and that stabbing pain in my gut were all signs that seemed to indicate I might have an incurable disease called Crohn's Disease. From there I was referred to a gastroenterologist who confirmed my doctor's initial diagnosis. What followed were questions, many nights of fists shaken toward Heaven, doses of Prednisone, treatments of all shapes and sizes, more Prednisone, a resection surgery, and two trips to parts of the world I had never traveled. Five years after being diagnosed with Crohn's disease I have found remission with the help of a tiny thing called a hookworm, Necator Americanus - American Killer. Somehow in the midst of them trying to kill me and me trying to kill them, a balance has finally been found. In this place of harmony, my hookworms are happy to dine on a few drops of my blood and my immune system gets a daily dose of Mother Nature's Xanax.

My gastro doc told me that my recent fluoroscopy showed no signs of inflammation at the site of my small bowel resection (the place formerly known as my terminal ileum). He said he was surprised that there was nothing there considering I'm not on any official medication. He did say that there was a spot on the left side of my gut, but that could have been my intestines having a spasm just as the picture was taken. In order to make certain there is no inflammation, he has ordered a pill cam procedure. My hope is that he is secretly writing a book on helminthic therapy and wants more proof that it works, but I think he's just doing this to be thorough. I didn't get any good pictures from my fluoroscopy, but considering the pill cam takes 3 pictures per second as it travels through my entire digestive system, I ought to have one or two good shots after this next procedure - maybe even a few of my residents waving at the camera!

My doctor said the "R" word

2011-05-25T23:16:00.000-05:00

My colon looks good. So good in fact, that my doctor used the word "remission." I'm cautiously happy (I think that's become my default position) because I half expect for something else to start malfunctioning. So I wasn't too shocked when the doctor's office called me on Tuesday to schedule a fluoroscopy for tomorrow. I'm glad he's being thorough, but it makes me wonder if he's expecting to see something. After doing so many of them, I've come to be less anxious about these types of procedures. But if you're a regular reader of this blog, you'll remember my last fluoroscopy resulted in evidence of my need for surgery (read that blog entry here: Pain Visualized).

If they let me hold my phone again, I'll be sure to try to take pictures.

Prep for Colonoscopy #3

2011-05-21T23:26:00.000-05:00

I have another colonoscopy scheduled for early Monday morning. It seems to me at this point that they should create some sort of version of a "Fast Check-out Lane" for veterans of this procedure. Maybe like they have at the airport; just give your special card to the guard at the gate, and you skip ahead of everyone else. Last time, I found myself giving one of the nurses advice on her bedside manner as she was instructing me on what was about to happen. I discovered that she had never had a colonoscopy before. I think if the police have to be Tasered before they can use a Taser, then everyone on hand for a colonoscopy should experience the joys of prepping for this anti-climactic procedure.

If you've never had one of these, then you're probably worried about what the doctor's going to do. Don't be. Sure, he's going to inflate you like a Macy Day Parade float, probably using a shop vac. Then he'll use the camera that Roto-Rooter uses to check clogged sewer lines and to find puppies that have fallen into wells - for all I know they may just call a plumber to do the colonoscopy for them. The good news is that ignorance is a wonderful sleep-laden bliss! The actual colonoscopy is the easy part. If you are lying on the hospital bed, wrapped in that handkerchief they call a gown, congratulations are in order. You've already survived the worst part...

The day before your procedure, you'll be living on nothing but liquids. Since starvation isn't enough torture, you'll also drink enough laxatives to keep grandpa regular for two weeks - in two hours. If slamming down a 64 ounce laxative-laced drink doesn't make you vomit, then that just means you'll have more to contend with on the toilet. You shouldn't expect to sleep, but should expect to endure the most inhumane thing doctors ever invented - no, not a colonoscopy, but the cleansing of the colon...and you're small intestines...and I'm fairly certain a small piece of who you is washed away in all of this. By the time you are wheeled into the room for the procedure 24 - 30 hours after all of this began, you'll feel like you just spent the last week in Hell. When you roll over on your side and pull your knees toward your chest, like the doctor asked, a part of you doesn't care anymore. Suddenly, the pillow your head is on feels softer than any pillow you've ever slept on; the bed will offer a level of comfort you never thought possible. It's almost as if you could just fall asleep right here, right now...

When you wake up, the procedure is all over. You are asked to pass gas by the nurse - you're still inflated remember? Once you can accomplish this task, you're helped into a wheelchair, taken to your car, and driven home by a friend, where you can sleep as long as you want.

While it's going to be routine for me, this third colonoscopy of mine will be a little different for my gastro, as I'm hoping he gets to see and take pictures of my hookworm colony. What I'm really hoping for is that he can get a head count on the number of hookworms living there (or is it here?).

You Really Should "Go With Your Gut"

2011-05-16T21:39:00.000-05:00

Do you remember learning in school about the different types of biomes found on Earth? Tundra, tropical rainforest, desert, etc. One of the reasons specific plants and animals thrive in these locations is because they are best adapted to that local climate. If you think of each individual's gut as having a certain type of "climate" then it makes sense that certain types of organisms would best thrive there.

The results of a recent study were published last month and the findings should be of interest for anyone with intestinal problems. Basically, the bacteria found in the intestines of humans can be broken down into three types. In other words, just as you have a blood type, this study indicates that you also have a gut type. In fact, one news article compared this finding to the importance of the discovery of blood types. The study not only has the potential to change the way gut problems are treated, but might also lead to a greater understanding of what triggers the symptoms found in Crohn's Disease.

http://www.sciencedaily.com/releases/2011/04/110420143620.htm

More thoughts on this study:

What if your immune system has adapted to a particular group of bacteria and now because of where you live and what you eat you are only getting bacteria that isn't well-suited for your intestinal "climate"?

The longer you have Crohn's Disease the more familiar you become with the foods that can cause you problems. It doesn't take long to realize that there is no master list of bad foods for people with Crohn's. While there may be some similarities, each food list is still specific to each individual. Could this be because of the variation in our gut types?

If I have a certain gut type, then how do I know a probiotic that works for one person will work for me? What does this mean for treatments like fecal bacteriotherapy?

So many questions!

Imagination Diverted

2011-04-30T10:40:00.001-05:00

You may have noticed that my blogging frequency has been decreasing. This is due in part to the fact that there is not a lot going on right now. I'm still in the "wait and see" mode until May or June when I expect to see the hookworms to do there thing. Since I'm not on any medication this time around, I've been treating my worm-induced symptoms with an Imodium a day, giving me regular bowel movements. I occasionally still have pain in my side, but this past week I've seen less of that, including days of no pain.

Many of the people I've met who are trying helminthic therapy or other alternative treatments, often talk about what they can do to help further the exposure of the thing that "cures what ails 'em." Not having the education or the attention span to understand a treatment down to its chemical properties or having the energy to organize a march on Washington, I've decided to go with my strengths. So the other reason I've been blogging less is because I've been distracted by another outlet for writing - science fiction. What started as a daydream of escapism, has now found its way onto paper as a future universe shaping into a novel. I figure if Gene Roddenberry can give us automatic doors at the grocery store through his influence with Star Trek, then maybe I can at least get people thinking a little more about what could happen if humanity continues to treat the symptoms of autoimmune disease rather than seeking out the causes.

Through the Looking-Glass, and What I Wish I Hadn't Found There.

2011-04-09T18:02:00.000-05:00

For me, a long blogging drought can be attributed to one of two things. Either I am wallowing in self-pity or pain (or both), or I am enjoying such an incredible improvement in health that I'm too busy enjoying life to slow down in front of a computer. For most of the month of March, I am happy to say that my lack of blogging can be blamed on me just feeling too good! I suppose maybe I was finally receiving the benefit promised by my surgeon or it might have been be that the weather was not too cold, not too hot, but just right. Regardless of the reason, I have been able to accomplish more work on my house, than was completed in the 4 previous years.

I've rebuilt my garden, demolished the old backyard shed, torn down and cleared a fence line, and even dug a 20 foot ditch in spite of the hard black Texas clay. One day, during my ditch digging, I wondered why my wife was not still outside helping me. At first I chalked it up to her just being lazy, but acknowledged that's not like her. I suddenly realized that she's not being a bum, it's just that I finally physically outlasted her. For the past five or six years, I was usually absolutely fatigued after only an hour of working, leaving her to complete whatever project we were working on. But now, I had just worked an entire day in the yard and only stopped because there was no daylight left!

After completing these projects, often times during the week after work, I would sit down to my after-shower supper and realize that I was tired, but only physically; the sort of exhaustion that comes from a good day of work. No pain, except from what I got from hard work. Normal bowel movements. A clear mind with which to plan my next landscaping project. This is the way things are supposed to be.

Unfortunately, it is becoming increasingly clear to me that Life can't possibly allow someone to enjoy their existence peacefully. A major stress event at work two weeks ago left me awake on the other side of the looking-glass, where comfort means pain and an abundance of energy is actually a tar pit of fatigue. Projects that I had planned for my yard, now sit covered in a mix of dead leaves and new spring overgrowth. I find that I can manage to water my garden, but then my aching joints and the sporadically growing pain in my side chase me indoors to bed. With a month or two more to go before I can expect help from the helminthic therapy I received in February, I wish I could just wake up from this twisted dreamland.

A Lesson in Ecology

2011-03-04T06:03:00.000-06:00

I'm currently enrolled in the Texas Master Naturalist Program that is basically designed to create a group of educated volunteers who can then be used to inform the public about the natural and cultural resources of Texas. I never thought I'd say this, but once a month I have the pleasure of attending a class on science or history. Last night, one of the topics we covered was on "Ecological Concepts." I actually recognized some of the information from biology classes in school (a few years ago...) and I also realized how much I apparently wasn't paying attention in high school and college.

An article written by Dr. Kenneth M Klemow, "Basic Ecological Literacy: A First Cut", summarizes nicely much of what I had forgotten. However, one of his suggested concepts is all too real for me:

Ecosystems are constantly changing, either rapidly or slowly. Those changes can be due to changes in physical factors, to the arrival or local extinction of the component species, to the organisms progressing through their life cycles, to altered relationships between the species, and to the species changing by evolution.

On February 13th, I received a dose of 35 hookworms, Necator Americanus, and I can tell you that the arrival of a species and their progression through their life cycle has brought on some changes! Since I haven't been on any immune-suppressing drugs, my immune system has been free to attack these foreign invaders. Apparently, the hookworms have moved on to the next stage of their life cycle and have begun attaching to the walls of my intestines, because yesterday the scrimmaging moved to a full-scale war. It started with me finding it a little more difficult to get out of bed, which I initially attributed to being lazy. Then the hookworm entry point on my arm began to itch again. By mid-morning, I wasn't feeling so great: mild abdominal pain, that "gut-in-transition" feeling, diarrhea, and at one point, slight nausea. Vowing not to lose my hookworms again, I took an anti-diarrheal tablet and decided on a 3-day, 30 mg Prednisone run.

Today seems a little better, though that could be attributed to the Superman feeling that Prednisone always offers. The hookworm side effects may seem like a dreadful thing for many, but I see it as just one step closer to healing as my team of 35 have become adults and will soon be playing Jedi mind-tricks on my immune system - There's nothing to see here, move along.

Planes, Trains, and Automobiles

2011-02-17T20:24:00.000-06:00

Is the fact that I just spent 5 days traveling over 10,000 miles to get another dose of hookworms enough proof of my belief in this therapy? This past Sunday, I received my first post-operation dose of 35 hookworms. As always, I felt the entry itch within 10 minutes and a little dizzy about an hour or so later (although that could be from being awake for 35 hours - I can't sleep in a moving car, nor on an airplane!) Now, a few days later I still have what looks like a small spot of poison ivy on my arm and the occasional itch.

My hope is that by infecting now, before I begin developing another stricture, the hookworms will have a better chance of surviving my hostile small intestines. I've been off any Crohn's disease medications since July, so it will be interesting to see what sort of reaction I have to the hookworms in about 3 weeks when they begin to nestle down in my gut. This batch of hookworms has a huge role to play, as I made a deal with my gastro that if the hookworms don't work in a year from my surgery (August 2011), I would agree to try his suggested medication. If the hookworms fail, and I then refuse to accept my doctor's advice, I'll probably be looking for another gastro. So, the climax of this chapter of my life is going to be this summer when I get the results from my doctor's examination - who knew a colonoscopy could be so exciting?

Interest Continues to Build

2011-01-30T07:24:00.001-06:00

The wave of interest in for helminthic therapy continues to grow. Here are a few reasons why:
-The results of various recent studies have come out; some focusing on the use of helminths, while others dealt with autoimmunity and they hygiene hypothesis.
-Multiple news agencies have picked up the above mentioned studies.
-Documentaries completed and in the works have helped tell the world ("Parasites: A User's Guide" and coming soon "Crohn's End").
-The collection of blogs that have been started to document treatment - my own blog, which was started as a journal to share with family and friends, has seen since its creation over 14,000 visitors from every continent but Antarctica.
-Online forums have been created to answer any questions you might have regarding this treatment
-There is even a Wiki site that has been created that has become a wealth of information - check it out: http://opensourcehelminththerapy.org/mediawiki2/index.php?title=Main_Page

-I think the biggest factor behind the growing popularity of helminthic therapy is the most important one: people looking for an answer to a disease that has ravaged their lives or the life of a loved one. You can not and should not stand in the way of that.

If you have not already, ask your doctor if he or she has heard of helminthic therapy. If not, then it's time to educate your doctor about a better alternative.

Transmission #06062006

2011-01-17T09:29:00.000-06:00

Luke,

This may be difficult to believe, but I am writing to you from the year 2044. It is entirely experimental at this point, but we can now send data to the past. A team of scientist are working on making the technique more accurate, since at this point there is a variance of about 4 years. My hope is that I get lucky and you receive this message before 2006. On 6/6/06, you will be diagnosed with Crohn's disease in your small intestines. You're going to feel some relief at being diagnosed, as you'll finally know what has been causing all of the malady. However, your relief will gradually turn to fear, sadness, and anger as the impact of this disease is realized. Stay strong. At first, you'll probably hear of promising drugs that can work miracles in relieving your pain. Unfortunately, while they may reduce the symptoms of your disease, it comes at a high cost; both to your health and your wallet. Before you begin down that road, I want to tell you of another option that you won't discover until 2009: hookworms. Yes, those parasites that freaked you out in high school health class will be your salvation. I don't have time to go into all of the details, but you need to do what used to be called "a Google search" for "helminthic therapy." Hookworms are also known as "helminths" and there are some good people trying to make them available to people with autoimmune-related problems.

Sadly, by the year 2044 we failed to win the war of public opinion against a company that created nanobots, or immuno-bots, that can cure disease. These microscopic robots actually have replaced the immune systems of most everyone in the United States of North America and Euro-Russia. At first, once you got the bots, you had to pay for a monthly software update from MicroPharm and enjoyed excellent health and long life. But then the bot virus happened and the handful of us that refused the immuno-bot treatment found ourselves waging an actual war against hordes of nanobot-driven humans.
We've managed to survive this long the old-fashioned way, with our own immune systems working in balance with bacteria and parasites that colonize our bodies.

My message to you is this: Do NOT wait to try helminthic therapy. Most people wait until they have no other option and by then it can be too late. I waited until I had exhausted all conventional treatments and now I'm missing a part of my small intestines.

I must go. The perimeter alarm just sounded and another wave of attacking bot-humans is coming. I hope this message gets to you in time...

Luke
January 17, 2044

Pup Prompted Pondering

2011-01-03T21:53:00.000-06:00

I took my two dogs to the veterinarian to find out why they both have been scratching themselves senseless this past week. After telling the vet about my recent road trip to Georgia, he suggested the dogs may have been exposed to something that caused an allergic reaction and then administered a shot for allergies. Since I now see everything through the lens of the Hygiene Hypothesis, I began to wonder if there is a higher rate of allergies with dogs kept indoors, who are more likely to be de-wormed. What if helminthic therapy worked for dogs and cats who have developed allergies? Of course, it gets a little more difficult to control the risk of reinfection with pets since they don't wear shoes or use the bathroom in the toilet. I also don't know which dog and cat parasites play nice like Necator Americanus (no population increase or transmigration). Would a study to find a cure for a dog's allergies using helminthic therapy be a way to also provide research for helminthic therapy for humans? I'm not talking about testing a drug on animals. I mean finding the cure for allergies, for both dogs and people, that is based on the same hypothesis. Anyone friends with someone in Veterinary Research at Texas A&M?

Russian Roulette, Lactose Intolerance Style

2010-12-16T07:38:00.000-06:00

The holiday season can be difficult for some people for many different reasons. Most of the difficulties stem from either having to face certain people or dealing with the memories of people. For IBD sufferers it's often not the people, but the food around which people gather. For those of us with lactose intolerance, the holiday buffet is nothing more than a culinary minefield. I live in Texas and have family in Georgia and in these southern states, it seems butter is the base for every recipe. So knowing that if it taste good it likely has butter in it, I often simply resign to accept my fated journey to the bathroom and enjoy the delicious food that surrounds me.

As family and close friends have come to understand that my Crohn's is not going away anytime soon, they have adapted their recipes to my dietary needs - a true sign of friendship! But at work and other social events, where not everyone knows about my digestive dysfunction, I often just pop 2 to 4 Lactaid Ultras and hope they work this time.

But a puzzling thing has happened these last two days, in which I have had 3 Luke-unfriendly meals various social events. For Tuesday lunch I ate spagetthi, cheesy garlic bread, a chocolate chip cookie, and a brownie. At supper that night, I had fried chicken and an assorted dessert plate (including cheesecake!). Finally, at a meeting Wednesday evening, I ate lasagna. At all 3 meals I took Lactaid and I have yet to have a disruption in my bowels! Normally, if I have pain in my side (as I've been having), it means the Lactaid isn't going to work. But this time was different. It makes me wonder if I could be experiencing pain in my side, not as a result of a flare-up but maybe from the surgery 4 months ago. Is that even possible?

My last hookworm dose was back in June, so those that survived the surgery should be working now. Maybe I'm seeing their handiwork...

The Only Thing We Have to Fear...

2010-12-07T08:10:00.000-06:00

One of my recent realizations is that I often avoid telling people how I'm really doing because I don't want to crush their optimism. I'm not talking about the usual "How are you doing? - I'm doing well, thank you." exchange. I'm referring to when people approach me and say, "So you're looking a lot better, I guess the surgery worked?" or "I guess you're at 100% now?" I usually find myself nodding my head in agreement, uttering a simple "yep." Who wants to make a conversation turn negative and depressing? However, a positive response has gotten harder to do as the pain in my lower right side has slowly started returning.

A couple of weeks ago (soon after getting a flu shot) I had the acne break out that haunts every teenager's dreams. Additionally, I began to wake up each morning with a runny nose and watery eyes. Going on what I mentioned in a previous post, I knew the appearance of acne and allergies were a sign that my immune system was ramping up. Hoping to avoid a full blown flare-up, I opted for about a 3-day run on Prednisone last week, which this week I'm following with doses of Pentasa. I'm also buying time until I can get another dose of hookworms in hopes of repopulating my now smaller colony, no doubt as a result of the surgery.

In only 3 days, I was reminded of what Prednisone can do to me. Of course, my acne and allergies decreased, but the crazy mental stuff increased; mood swings, quick thought and speech, and vivid dreams...
You will never get a more honest and clear picture of what a Crohn's sufferer is going through than when you read my account of a dream I had last week. Dream analysis is sometimes controversial, often very subjective, and usually looks more like palm-reading than anything else. But I don't need my degree in Psychology to understand what this dream is saying. So put on your tweed jacket, pull out your notepad, and start analyzing as I recount my dream...

The unfamiliar house is dark while it seems a storm may be approaching outside. I find myself dulled in every way; my feet refuse to move quickly, my eyesight fails me. I stumble over unknown furniture. Angry at my body’s disobedience, I slap myself in the face and barely feel a thing. My wife approaches and walks along side me, intending to lend support with her arm, but does most of the walking for me. She helps me shuffle into a dark bathroom where I manage to finally sit down on the toilet, only to rest my weary legs.
Through a window I did not notice, a distant light from outside offers just enough for me to see something in the toilet. Looking between my exposed legs, the object rolls over in the water to reveal a deranged face placed on a decaying head. I try to leap from danger, but find my legs do not respond. I began to cry out, hoping that my wife will hear me and come to my rescue. My voice fails me. More light spills into the room and I can see the sunken eyes of the head staring at me. He wants me. His lips, peeled away from rot, reveal a snarl. His brittle hair floats in the water, forming a demonic halo around his decapitated head. Terror takes hold of me further and I try to scream again. I begin to hear a low moaning. I must make a sound to alert my wife. I conjure my voice from deep within my chest and try to yell, but fail. The moaning only gets louder as the head glares at me. My terror turns to chills as my body runs cold, the moaning sounds more desperate now.
Slowly, the light increases and the moaning becomes more distant. The bathroom becomes my bed and my two dogs stand over me smelling my face. My wife asks, “What’s wrong?”

You know what's cool? Aquaponics.

2010-12-01T21:28:00.000-06:00

This may seem like a random post, considering that this blog focuses on my fight with Crohn's disease and my decision to use hookworms as my drug of choice. But, if you consider that it was my interest in better gardening methods that opened my mind to trying helminthic therapy, methinks this post makes sense.

While talking to a college student the other day about his major in Environmental Studies, the conversation turned to the topic of aquaponics - a new word for me. I had heard of hydroponics and was familiar with aquaculture (though not its official name), so once the student explained the word aquaponics was a combination of the two, I quickly understood. By combining the growing of plants in a tightly controlled water system with a tank for raising fish, one is able to create a system that is symbiotic.

Anyone who has every had an aquarium knows that if you don't clean out the water regularly your fish will eventually die. When growing plants hydroponically, you have to add nutrients since their is no soil. So along comes some genius who realizes that the waste the fish produce can be absorbed by the plants, thereby filtering the water and giving the plants nutrients. In an aquaponic system, the fish produce ammonia. A bacteria then converts the ammonia into nitrites while another bacteria converts the nitrites into nitrates. Then the plants happily absorb the nitrates. How awesome is that? Obviously, this is more or less the way it happens in any natural body of water. It's just cool that we've figured out how to replicate the process. It's funny that as we improve our techniques in farming or in medicine we often discover that nature discovered the technique a long time ago.

Now I've been daydreaming of an aquaponic garden in the spring. Fresh veggies and fresh fish...mmmm.

A bacterial conversation

2010-11-24T08:13:00.000-06:00

As usual, many of you that read my blog are more informed about what I'm discussing than I am. I suppose that's the way it should be - the lab rat should never be smarter than the scientists! With that in mind, I would like to continue the conversation from my previous post about the body as a theme park for bacteria. Several of you asked questions in the comments section of that last post and I'll answer them as best I can.

@coloncomrades - Since I'm lactose intolerant the SCD yogurt sounds great. Thanks!

@reid - Herxheimer Reaction might explain why I found out I had Crohn's disease, because it was soon after taking a load (as in a lot) of probiotics in 2006 that I had all sorts of pain in my gut. Since that day I've been hesitant to try probiotics again. Also, while in college, when I was still trying to figure out what was wrong with my bowels, someone suggested I eat yogurt...a short time later I was doubled-over in pain on the floor! I suppose both are cautionary tales of the importance of moderation. If only there was some sort of person trained in the knowledge of the human body who could advise me on such things...

@anonymous #1 - "Wrong foods," particularly those with dairy or large amounts of grease almost always lead to diarrhea for me. Post-surgery, food can now make it through my entire digestive track in 4 hours. I'm pretty sure that's some sort of land speed record! I've never been tested for Celiac. I'm guessing you can have both Crohn's and Celiac? yay.

@anonymous #2 - No more worms yet. A post-op stool sample showed that at least some of the hookworms amazingly survived the surgery. Since I have to travel out of the country to get more, it will be a while until I can save up the money.

@emma - After Reid's comment, I think I may be willing to try probiotics again - slowly!

All of your questions only caused me to have more questions, which I'm going to direct at anyone who wants to answer.

-If we have a lots of different bacteria, likely in different population ratios than anyone else, then would it make sense (and is it possible) to take a census of sorts of all of the bacteria in our body BEFORE wiping everything out with antibiotics? Then once the antibiotics are finished, you would know what bacteria to replace. The more I think about this, the more I picture it in a science fiction book, so it may not be possible right now. At any rate, thoughts?

-Is it necessary to take probiotics every day or do they establish a colony and grow on their own? I guess Caveman Joe would have been replinishing his bacteria stock by what he ate. In other words, how can I avoid paying for the health food store manager's vacation and get the bacteria elsewhere?

If you post a comment, it would be helpful if you signed in or at least signed your name so I can respond to you. If you want to remain anonymous, just sign it with a letter of the alphabet or a number or a Star Wars character's name. Thanks for all of the input!

P.S.

On the topic of bacteria, this is just cool:
http://www.popsci.com/science/article/2010-11/modified-bacterial-glue-can-shore-cracking-concrete

Don't Feed the Bacterial Monkeys

2010-11-08T07:39:00.000-06:00

I've mentioned before that reading Mike McGrath's "Book of Compost" not only changed the way I garden, but also the way I view the world. In fact, the realization that each one of us is home to microscopic lifeforms was my inspiration for the word "lukecology." I also chose it because it sounded better than "lukebiome." There is a lot of exciting stuff being written now about how our bodies require a healthy balance of micro flora and fauna, inside and outside. Each of us are the keepers of our own zoo. And just like in a real zoo, it's unwise to let breeding go unchecked.

A couple of weeks ago I went to a 3-day conference for work that made it difficult to be as selective as I normally am with my diet. I believe this sudden infusion of foods high in sugar led to a rapid increase in some of my intestinal bacteria, presenting me wonderful bowel problems. At the time, I had just finished reading Michael Crichton's "The Andromeda Strain," in which scientists seek to stop the spread of a mysterious microorganism. Crichton surprised me with his view of the human body as a place where the bacteria must be kept in balance - because he wrote this in 1969! At any rate, completing this book caused me to begin considering the fact that an unbalanced bacterial colony might be causing my "disturbance in the Force." So I ventured to try eating yogurt (with the help of Lactaid) to see if the addition of a different bacteria might bring balance. The last time I ate yogurt, 7 or 8 years ago, I was on the floor doubled over in pain within 10 minutes of eating it. This time around was different. My bowels returned to normal (for a brief time, as I later ate something that didn't agree with me). Using yogurt, I've now added a new tool to keep my "zoo" in order.

P.S.

Unfortunately, the brief intestinal fluctuations have now left me with an occasional pain (once every day or three) in my lower right side - the area of resection. I'm hoping these are healing pains and not a return of the inflammation.

"Crohn's End"

2010-10-23T19:28:00.000-05:00

Many of you who read this blog do so because you are interested in the available alternative treatments for illnesses such as Crohn's Disease. I spend my time in this blog focusing on helminthic therapy because that's what I'm utilizing. However, if you are searching for other alternatives, there is a new documentary coming that will provide first-hand information by individuals trying the various alternative treatments available.

In his first documentary, Crohn's fighter Reid Kimball travels the country exploring the alternative treatments available to people with IBD. Through personal interviews, viewers will have the opportunity to hear about the experience of others in the film "Crohn's End". Of course, like most documentaries, this one is going to need funding. So if you're interested in helping out, from as little as $1, you can do so by following this link:

http://www.kickstarter.com/projects/rbk/wanted-crohns-end

In the interest of disclosure...yes, the bearded man in the video is me. So if you can't justify supporting Reid's entrance into the film-making world, you can always back my acting debut! Seriously though, documentaries that provide the public with good information about helminthic therapy will help to further the cause of "mainstreaming" this treatment.

Pulled from the Depths

2010-10-13T08:01:00.000-05:00

As I watch the rescue of the 33 Chilean miners this morning, I can't help but try to imagine what they have been through. Being stuck deep underground for two months with no sunlight and only the smell of dirt and the scent of humanity, eight weeks past due of a good bath is enough to test anyone's patience. But if that's not enough, then each time you fall asleep the thought that this underground mine could be your tomb would surely push one over the edge. Complete and utter despair amidst a truly dark place. Yet knowing that an escape was being prepared for you and that each day you face brings you closer to rescue could certainly keep desperation at bay.

When I was first diagnosed with Crohn's disease four years ago, my gastro doctor told me a very alarming statistic. He said that the leading cause of death among people with Crohn's is not the disease itself or its complications, but suicide. He warned my wife and I to be prepared for the dark days of depression that often accompanies this disease. At the time, I let my imagination run wild, trying to predict what could be so horrible that many would choose to end it themselves. I assumed that it had something to do with the pain. That the human mind could only endure so much pain before decides to stop it permanently.

After enduring my own pain, I now realize that you learn to live with the pain and that your brain finds ways to mentally dull your awareness of the constant intestinal gnawing. The reason people with Crohn's disease may choose to take their own lives is no different than anyone else who may choose the same path: loss of hope. One can only endure failure for so long; failure of succesful treatments, failure of future dreams, failure of having a "normal life". While this disease ravages the intestinal track, it also slowly destroys its victim's mental state. Many other diseases do the same combination of damage, but are far more effective at destroying the body before the mind is defeated. With Crohn's, our treatments are good enough to prolong the life of the body, while the brain is beaten into submission. But, like the miners trapped deep beneath the earth, most with Crohn's disease face each day because they know that rescue is coming. They cling to hope because on the horizon some new treatment is being developed, questions are being answered, and normalcy may one day return. This is why treatments such as helminthic therapy are so exciting to many of us. These tiny hookworms represent hope. They cause one to dream that maybe there is something out there that can offer long-term relief from this disease; that this life will not be a tomb.

Good news everyone, I tested positive for hookworms!

2010-10-04T07:57:00.000-05:00

I received the results of my parasite test from Autoimmune Therapies and it turns out I still have hookworms. (If AIT were con-artists, which they are not, it seems like they would have tried to convince me to buy more of their product!) Even better news is that this week will be 4 months from my last dose which is normally when the hookworms really begin working to calm down Crohn's disease. Since my surgery nearly 2 months ago, I've felt some pain in my lower right side. However, I'm not sure if that's a result of the healing process at the resection site of my small intestines or if it's the return of my Crohn's disease. Either way, my healing, now with the aid of Necator Americanus, will require more time...

In other news, I've formed a hypothesis (that's likely already been written about - nothing new under the sun...) in which I believe acne is a symptom of an over-active immune system. In the past, during times of stress, I have noticed an increase in acne - which would explain the appearance of zits on most American teenagers just before prom! During these past 7 weeks following my surgery, in which I was not taking any of my usual immune-suppressors, I had a rather painful outbreak of acne. Normally the face wash Proactive works very well for me, but not even it could stop the horror that seemed to form deep in my being and push to the surface of my skin. I've slowly started to win the battle for my face, but it also could do with the change to cooler weather and dryer skin. Somewhat randomly during this experience, I wondered if cavemen had acne, since there are no cave-paintings of great warriors engaging in a ritual face-scrubbing after a wooly mammoth hunt.

My hypothesis goes like this: 1) bacteria grows on the face (just like everywhere else), but maybe the face is more habitable due to the oil secretion leading to an over-growth, 2) immune system goes into attack mode and then forms pustules.
So if acne is auto-immune related then why do topical treatments work? Because they both kill off the bacteria and make your face an uncomfortable place to live. When I'm on Prednisone, I normally don't have acne initially. However, if I stay on it long enough and it begins to effect my hormones (mood swings, et al), I've noticed an increase in acne. Could the change in hormones allow for an increase in oil secretion or something else that is conducive for bacterial growth on the face? From what I've seen, I believe so.

Recently, a report came out that those who took Accutane (an acne medication), had a higher risk of developing diseases like Crohn's. While I think Accutane is almost as evil as Prednisone, I believe those that develop Crohn's are already predisposed to the disease. If that's the case, then could acne be used as an indicator of the risk for an autoimmune disease? Could a doctor not look at a patient's family history, check their face, and say to a 17 year old, "You have a high potential for developing Type II Diabetes. Let's begin modifying your diet now so you'll be okay"? I suppose the same preventative measure could also be used if someone had severe allergies. In the same way, I now read the appearance of acne as an indicator of an over-active immune system and therefore a good sign that my intestines are beginning to become inflamed.

If you find anything written on acne as a symptom of an autoimmune disease, let me know.

Just a little more time

2010-09-19T21:43:00.000-05:00

Fearful of a flare-up from my unimpeded immune system as I slowly recover from surgery, I decided to take advantage of the "just in case" prescription that my doctor wrote me for Pentasa. Not being a biologic drug, it seemed to lack a lot of the major side effects accompanied by other meds I had taken. Pentasa is normally given to people with mild to moderate Crohn's (I've been labeled with moderate to severe), so I don't know how effective it will be. I'm not expecting it to give me a remission, just to slow down the inevitable inflammation that will occur, at least until I can get another dose of hookworms.

It's now been 5 weeks since my surgery and I've been able to eat most raw vegetables without pain in my side - even though I can't really absorb them. I ate partially steamed carrots and broccoli today at lunch...I can feel those in my side, so it may be too soon for that much fiber. In a couple of weeks I should be able to send off a stool sample to see if any parasites remain, then begin scheduling for another dose. Considering the acne and allergy problems I developed while completely off any drugs, I'm assuming that means my parasites are also absent - "while the cat's away" and all that.

One Year Later

2010-09-09T21:54:00.000-05:00

A year ago today, while still taking Humira once a week, I took my first dose of Necator Americanus; hookworms. Four months after I dosed, I began to notice less pain in my lower right side and a decrease in my trips to the bathroom. Before I realized it, I was going 7 days at a time without any pain at all! Had I really found a cure for my Crohn's disease that didn't involve taking a drug that led to cancer or enduring surgeries that eventually led to wearing a bile-filled bag on my hip? My hopes began to swell. Until after enjoying about 3 months of what normal people experience, I began a rapid decline. Spurred on by a stomach virus, my bowels did their best to purge anything foreign from my intestines, including my very helpful hookworms. As soon as I recovered from my virus three days later, I noticed a return of the pain I had almost forgotten and the renewal of my excessive bathroom routine. My weekly Humira was clearly not working without the hookworms present, so I opted for another dose. Of course, this meant I had to leave the country for another treatment since the FDA so "wisely" classified hookworms as a drug in October 2009. After receiving my second dose, I had hoped to hang on for four months, when the hookworms would likely begin working again. Unfortunately, the intestinal stricture, that was first identified back in 2006, had been working overtime. After some tests, it was discovered that I had around 30 centimeters of small intestines that had closed to one eighth the normal size. During a follow-up two weeks after the procedure, my surgeon told me that he was unsure of how I had been eating anything. He said that the intestinal wall just before the stricture was showing signs of stretching where my food had begun to back-up, but amazingly had never caused a full blockage. Sadly, the surgery most likely wiped out any remaining hookworms I might have had.

A year ago, the future seemed to be basking in a hopeful light. A year later, it's a lot harder to remember what that hope looked like. I'm uneasy as I await, un-medicated and de-wormed, for a return of normal bowels that will allow me to provide a solid stool sample for a parasite test. I keep telling myself, "I had three good months with the hookworms. I know they work. I just need more time and better control of the colony population." So I hang on to a hope, birthed from three months of goodness, risking another chance at surgery to avoid some yet-to-be-known disease, conjured from years of using biologic drugs, twenty years after the fact. Life wasn't supposed to be this complicated!

The Return of the Jedi - Sort of (in a wounded, that-sure-seems-like-a-long-way-to-walk kind of way)

2010-09-03T07:25:00.000-05:00

I returned to work full-time this week after being out for two weeks following my small bowel resection, which really seemed like a good idea considering my level of stir-craziness. Now, however, with the assistance of hindsight, I see that maybe I should have tried a week of half days first. On Wednesday, I began to realize that standing up for any length of time led to a feeling that I can best describe as a sore muscle mixed with a light cramping, burning feeling. When I awoke this morning, there was a lot more burning and tearing sensation than anything else. I don't know how much of this pain is just my muscles complaining about being used again or if it's my muscles being torn away from the stitches under my skin. Hopefully, this long weekend will give me more time to heal...even though I'm going to bored out of my mind and feel like I'm wasting my time since I usually like to do home improvement projects on long weekends.

On the topic of healing, I met with all of my doctors last week and it was agreed that I would try my way for one year. If at the end of the year my Crohn's disease is worsening, then I told my doctor I would try the medication he's suggesting. My way includes: helminthic therapy and a lifestyle change based on the book, "The Primal Blueprint." Most, if not all, of what the author of this book says is in line with what I've been preaching for the past year. I've already converted breakfast and supper into a diet similar to the Paleolithic Diet. As I learn what is okay to eat with this change, I'll also adjust how I do lunch. My hope is that since my immune system was designed for a caveman, maybe eating, exercising, and housing parasites like one will set things right. The alternative is far worse!

Wanna See My Scar?

2010-08-25T10:37:00.000-05:00

I'm unable to count the times I have shown off the various scars on my body, particularly as a boy. Injuries from work, play, and surgery have given me a nice collection. Growing up, I always showed off my scars because each one was a marker of an event in my life. Each scar was proof that I faced adversity and am able to live another day. A scar says, "I handled that situation." In literature and film, the character with a scarred face is a battle-hardened warrior, not the sheepish accountant (no offense to accountants). The evidence of a near mortal wound on a villain doesn't leave the audience saying, "Oh, that poor dear," but instead gasping, "What has he been through and can anything stop him?!" In the real world, scars are the Boy Scout badges of life. We've been wounded, yet have recovered to tell the tale of our victory.

I have finally removed the bandages from my surgery incision. The nurse had told me that they would likely fall off in the shower 7-10 days after surgery. It's been 12 days, so I thought it was time to take them off myself and to my delight...it looks like I might have another scar!

At this point in my recovery, I'm still dealing with muscle soreness from the surgery (I stretched this morning when I awoke and was quickly reminded that I shouldn't do that). The former incision site is also starting to itch, which is good, but an annoyance nonetheless. Today, I will meet with my GP to schedule a blood test and to discuss any other adjustments I need to make to ensure I'm absorbing the right nutrients. Tomorrow, I will meet with my surgeon to hopefully get the all clear to return to semi-normal life. Then later I'll visit with my gastro to discuss my treatment options. I'll be lobbying heavily for continuing with helminthic therapy.

Action Heroes Have it Easy!

2010-08-17T10:17:00.000-05:00

I love a good action movie. If I need a good diversion to escape from life for a little while, just give me two hours of well-choreographed stunts, a handful of beautiful explosions, and a hero with a poor English accent (there's got to be a direct correlation between how bad an actor's accent is and how good he is in martial arts; why else would they have hired him?!). In fact, a large portion of my recovery time will probably be spent watching them on Netflix. Unfortunately, after this surgery I don't know that I will ever see an action flick in the same way.

WARNING: NOT FOR THOSE WITH A WEAK STOMACH!

How often have you seen a hero shot or stabbed in the gut, only to be bandaged up and sent back out into the action? What they don't tell you is that when the intestines are cut, that blood doesn't just soak through the shirt in a great display of battle damage. Nope, there is a lot more going on. Yesterday and late into the night taught me that intestinal bleeding (or former bleeding) follows the path of least resistance. Were our hero's story told in reality, most of the action would be of him making so many trips to toilet that it would make an Aztec god cry, "Enough with the blood already!" The surgeon told me that I would pass blood, but I never imagined there would be that much (I'm no stranger to hunting or life on a farm, so I know what a lot of blood looks like, so I'm not just some person that goes weak in the knees at the sight of a papercut).
Attempting to distract myself from this recent development in my recovery from surgery, I could barely make it through an episode of "24" before hurriedly hobbling to the toilet for another round my own little Tarantino film. At one point in the night, I began to question if this was all old blood from the surgery or was it fresh; leading to another question, "What if I bleed to death tonight?" If you ever want to have a restless night, go to bed asking yourself that question.
Thankfully, my prescription of hydrocodine got me to sleep before I could dwell on my future for too long - and obviously, it was a question not worth bringing up in the first place. I'm happy to report my blood sacrifices to the porcelain god have lessened in frequency and I'm hopeful that I can eventually begin to have it easy like Jack Bauer, merely bandaged and back into the action.

Back Among the Living!

2010-08-14T19:42:00.000-05:00

My surgeon tells me that the procedure to remove 30 centimeters of my small instestines went exactly according to plan. He also said that given the amount of stricturing he found, he's suprised that I was able to eat my diet of blended chicken and rice this past month without having an intestinal blockage. At one end of the stricture he found evidence that my intestines had begun to stretch as a result of the food being backed up after each meal. This would explain the pain that I was experiencing. What they did not find, to the disappointment of the nursing staff, were any signs of hookworms. My hope is that my helmniths had migrated north long enough to dodge the removal of their home. However, it's more likely that either the hookworms were too small to see or I lost them in the intestinal purge prior to my surgery.
Today I will continue my lovely diet of ice chips and water. Tomorrow they are going to let me try tea, juice, and jello. If all goes according to plan, then I should be able to try solid food on Monday and possibly leave the hospital on that day or Tuesday. As soon as I begin having regular bowel movements, I hope to send a stool sample off for parasite tests. This will let me know if I'm infected at all with hookworms. Then it will be time to plan for another trip out of the country.

Thanks for all your prayers and well-wishes!

And Away We Go!

2010-08-12T22:43:00.000-05:00

I had hoped to offer some sort of beautifully composed pre-surgery reflection. As it turns out, the ingredients required to efficiently flush one's digestive tract are not also helpful for loosening the imaginative process. The mere thought of drinking lime Gatorade any time soon makes me want to vomit. Strangely, I can also dream of a large hamburger and my mouth begins to water for different reasons. And so, my creative power finds itself occupied with a mental fight between vows of "never again" and fantasies of "oh, I can't wait."

At noon tomorrow the doctors will remove 11 inches of my Crohn's-stricken small intestines. For the next two weeks I will be in recovery in the hospital and then at home, during which time I will begin plotting the realization of my dietary fantasies and implementing my plan of attack against my Crohn's disease: helminths, diet, and meditation/exercise.

Pain Visualized

2010-08-05T21:49:00.000-05:00

Since my fluoroscopy, more than a week and a half ago, I've not had a single day without pain in my lower right side. In desperation, I've even tried another short trip on Prednisone; daring to go past 7 days when I usually begin to feel the myriad of hated side effects this drug has to offer. A diet of soup and food, chewed so thoroughly that it could be sucked through a straw, has yet to bring me the relief I seek. I suppose that some of this could be psychological given that I can now easily mentally picture the stricture that plagues me.

The small black line going from center to left is my stricture. The dark area at the top is the width of a normal small intestines. The gray behind the black is my spine and top of my pelvis.

Considering my fear of surgery, in particular what it means in terms of losing a little ground in my fight with Crohn's, know that I did not come to my decision to have a small bowel resection lightly. But when I consider the risk of having an intestinal blockage in the worst case scenario and continuing with daily pain in the best case scenario, removing this severely scarred section of my small intestines is the best course of action for me. My hope is that on the other side of my surgery, now scheduled for August 13th (yes, a Friday!), I will get a second chance in the race against my Crohn's; without it getting an early start on me this time around.

The Empire Strikes Back

2010-07-31T01:55:00.000-05:00

I have a distinct grade school memory of "Field Day." This was an annual event at the end of the school year in which everyone gathered outside to compete in a weird mix of track and field combined with gym class. Often times the teachers would match up class versus class or even grade versus grade. One of the prime events for a young versus old mismatch was the tug-o-war. I'm sure the teachers were attempting to give a lesson on humility and not seeking to enjoy the total decimation of younger students by the older ones. The strategy in these matches for the younger teams was usually to put the fattest kid in the loop at the end of the rope. Somehow it made sense that his heavy weight would be an anchor for the whole team. It never worked. So each match when you were expected to defeat an obviously stronger opponent, you grabbed the rope, knowing in the back of your mind that defeat was inevitable, yet hoping that maybe the other team might slip or an eagle would fly down and help (I had a busy imagination in 4th grade!).

On one occasion, I somehow found myself in the loop at the end of the rope. I was by no stretch of the imagination ever the fat kid, so I have no idea how this happened. At any rate, I took my role as anchor seriously. Planting my heels firmly in the poorly manicured field, I braced against the coming rope tug from the other side. I knew defeat was already guaranteed, but had in mind to stave it off as long as possible. When the opponent's surging tug began to slowly pull my team towards the line of defeat, I could do nothing but watch as my heels slowly cut into the sand and stones of the playground. Eventually, my balance was tipped and I was forced to take a step closer to the opponent before I could dig my heels in again. Suddenly the thought hit me that I might be more effective if I turned my back to my team and leaned my waist into the rope. I soon found myself sliding more than before, slowly yet steadily toward loser world. In a last ditch effort, I flung myself to the ground and began clawing at the dirt as it passed by, grasping clumps of grass and weeds only to see them uproot in the same moment. I knew defeat was in my future, but I was determined to do everything to delay its inevitability.

The strategy in the fight against Crohn's Disease seems just like school yard tug-o-war. You know that eventually you're going to see defeat, but you keeping fighting with every heel-plant and ground-claw to delay that future. You try every treatment possible to avoid surgery. Because once you start down that path, you're only dealing with less and less intestines to remove until you have none remaining.

This past Monday I had a fluoroscopy done as preparation for a Pillcam procedure. As I lay there watching the live x-ray of my bowels, I could feel my heels slipping a little in this fight. By my untrained eye, I knew the image on the screen was of my stricture and it had gotten worse. A call from my doctor the next day confirmed it: 11 inches long and one eighth the size of a normal intestines. He said there was no way a camera would fit and that surgery is really my best option at this point. This coming Monday, I will be meeting with a surgeon for a consultation and scheduling a laparoscopic small bowel resection within the next week or two.

However, once I have the surgery my gastro doc has agreed to let me use helminthic therapy in place of the customary biologics that are prescribed to delay the inevitable return of the Crohn's disease. He said if it works, we will look like geniuses. It seems he might believe in rope-tugging eagles as well...

Milk (of Magnesia) and Cookies

2010-07-25T21:33:00.000-05:00

My gastro doc would like to schedule a Pillcam procedure for me so we can see more of my intestines than a colonoscopy can offer. It's kind of exciting that I'll get to see 4 to 14 pictures per second as a result of a tiny camera passing through my digestive system. At that rate, I'll be able to compress the images into a video. I think my gastro doc is excited as I am about getting to see my hookworms up close. Don't worry, I'll be sure to post pictures! Of course, since the Pillcam is not a standard procedure, my doctor and I have to jump through hoops to get my insurance company to sign off on it. The first hoop occurs bright and early tomorrow morning with a fluoroscopy (it's a flush the gut, drink a nasty milk shake, and then glow in the dark kind of procedure). This will allow the doc to see if my stricture, an intestinal narrowing that was previously 12 inches long, has gotten worse or if I have any inflammation in other areas. The biggest danger of swallowing a small camera is that it gets stuck in the narrowest portion of my intestines. Hopefully, the procedure tomorrow will offer a definitive answer to put any of my fears to rest. Why do all of these procedures start with drinking something horrible?

This past week I made another short run of Prednisone and found myself to have less pain; certainly less than the pain of last week! It's now been 7 weeks since my second dose of hookworms joined the party and as much as I'd like to think that they're helping out, I know we are still in the "getting to know each other" stage. There's a very good possibility that I lost some of the hookworms from the first dose considering the decline in my health following that mid-April stomach virus (For some reason I had imagined the hookworms latching on and never letting go for 3 years. In actuality, it's more like they graze over an area of my intestines). Hopefully, I only experienced a minor loss, which will be overcome soon by batch number two. Once I've gotten the Pillcam procedure out of the way, I plan on having another blood test done to see what is going on chemically in my body.

Kryptonite

2010-07-16T20:33:00.000-05:00

While my Crohn's has caused countless interruptions in my daily schedule before, I don't think it has ever sent me home from work due to pain...until now. I've never been kicked by a horse before, but I've had a front seat to nearly being kicked by a cow. So I can imagine what a powerful hoofed-punch to the body must feel like. This week my body did more than just imagine, it recreated the scenario with a swift blow, followed by a crushing pressure to the lower right side of my belly. I have a fairly high tolerance of pain and have endured the annoyance of a regular gut stabbing increasingly since late April. But the knee-buckling hurt I felt one day this week quickly reminded me of my own weakness and mortality. A world that once seemed conquerable, now looms insurmountable.

Is cutting back my Humira dose from once a week to twice a month to blame? Is my body fighting the second dose of hookworms? Did I lose some of the first dose hookworms due to the stomach bug back in April, thereby reducing their immune-modulating power? Is the stress of work becoming too much? Is my Crohn's moving from "moderate to severe Crohn's" to "severe Crohn's"? Or did I just eat something I shouldn't have? The frustrating part is that it could be all of these things or none of these things.
All I can really do right now is switch to my "flare-up diet" (soft and/or liquid foods only), try to de-stress, maybe take some Prednisone, and give it all a little more time.

Your Doctor and You

2010-07-03T08:40:00.000-05:00

Like any good relationship, the one between doctor and patient must be built on trust and communication. When either one is absent, the relationship stutters and eventually fails. An open and honest discussion is the first step to determining the best treatment for a patient, not a battery of tests and the process of elimination. From what I hear, I am quite lucky to have two excellent communicators in my general practioner and my gastro doc. Both of them have been interested in how my response to helminthic therapy has been, allowing ME to choose what I want to do. As you might have guessed, my meeting with my gastro doc this past Monday went very well. I told him about this past year of a double dose of Humira and the lack of any noticeable improvement. I also explained how in August I will have had my first dose of hookworms for 11 months (when they begin to be most effective), with the second dose approaching 2 months. I pointed to the data in my "GI Monitor" app that showed the decrease in pain and bowel movements that occurred beginning in January and ending in April when I had the stomach virus that sent my immune system back into overdrive. Through simple communication, a dialogue between two human beings and not a decree from master to slave, my doctor and I agreed that I will move back to 1 shot of Humira every two weeks instead of every one week over the course of my next three injections (the number of injections I have already purchased and didn't want to just throw away). He also prescribed me Prednisone as a back up plan in case my immune system flares violently with the removal of the Humira.

So this past week I skipped a dose of Humira and took a 10 mg, 20 mg, 10 mg, 20 mg, 10 mg dose of Prednisone each day to act as a buffer. Other than my usual crazy highs and bursts of creativity, the Prednisone only brought pain relief this week and resulted in normal trips to the toilet. Today I will stop taking the Prednisone, as I want to avoid more than 7 days. Tomorrow I'll take the first of hopefully my last 3 Humira shots.

In about a month, I'm going to know for sure if these hookworms can work, without the aid of ANY medication, to treat my Crohn's Disease. This is what I have been waiting for.
Your prayers, well-wishes, and goat-sacrifices are all welcomed!

Hookworms on deck

2010-06-27T08:47:00.000-05:00

My symptoms have dropped off greatly this week. I've had a couple of cases of major bloating, but that was my own fault for eating a huge burrito with beans. My stools are a lot more solid now. I doubt it's the results of the new hookworms this soon, but maybe the old one's regaining ground. On Wednesay, the new batch will reach adulthood and should start going to work.
I have a gastro doc appointment tomorrow in which I am going to propose ending my use of Humira. I've seen a decline in its effectiveness over the past year and am now taking twice the "normal" dose. In all honesty, the stories of people who use Humira developing lymphoma or some other type of cancer has me terrified and I will be glad when I am off this drug. Given the FDA's poor track record in preventing dangerous drugs from making it to the market, I'm not inclined to trust their opinion on this drug. There's just no way they can know the long-term effects from a short time of observation. So, pending my doc's approval tomorrow, I'll be stepping out into full dependency on the 65 or so hookworms that reside in my intestines. Guys, it's time to earn your lunch.

Check out the article below about Hookworms!

Musically painful

2010-06-17T08:58:00.000-05:00

It begins with a slight aching of my joints, then moves to aching muscles. As the pain moves over my body, I start to get a headache. Chills wash over me as a low fever sets in; moving up to around 100 F, then resetting at 98.6 F, only to swing upward again. The mere touch of anything to my skin is the tactile version of fingernails screeching down a chalkboard. Not to be left out, the pulsing pain in my side joins in like the percussion section of my hours-long symphony of suffering.
I experienced similar symptoms about two days before I reinfected myself with hookworms, so I'm wondering if last night's presentation was more a response to work-related stress than the "worm flu." Of course, it doesn't have to be either/or, it could be a combination of the two. Whatever it was, I'm glad it's over for now. Another day of Crohn's disease is behind me.

Let the Tournament Begin!

2010-06-12T11:38:00.000-05:00

For 250 to 400 million people, yesterday marked the beginning of the greatest sporting event on the planet...the World Cup. Every four years 32 teams from around the world compete in a month-long tournament to determine who is the greatest. This year, the World Cup Finals are being held in South Africa or that's what they want you to think...

Yesterday was my sixth day of a new hookworm infection and it felt as if a tournament of global proportions had begun in gut. Bloating, cramping, gas, and trips to the toilet make me fairly certain all 32 World Cup soccer teams are currently brawling in my belly. It comes in waves (I suppose they have to pause for station identification and commercials) so during my times of relief I am able to accomplish things at work and at home. But when the waves hit...ugh. The alternative would be a stabbing pain in my side, joint and muscle pain, fever, and fatigue from a Crohn's disease flare, so I endure it.

The good news is that all this action in my intestinal tract is proof the hookworms have made the journey from their point of entry to my intestines. I just hope that THIS tournament finishes up in less than a month!

An Undisclosed Location

2010-06-08T00:48:00.000-05:00

Two days ago I infected myself with 35 more hookworms. My hope is that these new reinforcements, bringing me to possibly 65 total hookworms, will help me regain some ground against my battle with Crohn's Disease. Of course in order to have access to this therapy, I had to travel outside of the United States. Thank you, FDA! So this past weekend, my wife and I took a medical vacation of sorts (also doubling as a celebration of our 8th year of marriage!). Tomorrow we will return back to Texas, hopeful of what this second dose has to offer.

This time around I am not taking Prednisone but am still taking Humira, so it will be interesting to see what sort of side effects I experience as the hookworms settle into their new home. I've developed a small rash at the point of entry which was expected. However, two days later I seem to have more raised bumps than last time, similar to the blisters found in a mild case of a poison ivy rash. My assumption is that this is due to the fact that my immune system recognizes the foreign invaders and is responding a little stronger. Day 4 should be when the hookworms make it to my small intestines, where they will mature by day 21. I guess I'll need to go back and read my old blog posts to remember what to expect during these early stages of the hookworm development.

Come on in, the water's fine!

2010-05-26T22:34:00.000-05:00

When I first started researching helminthic therapy as an option for treating my Crohn's disease, I did not really know where to start. I first heard about helminths from my doctor who mentioned work that had been done with the use of pig whipworms. So I went home and started googling pig whipworms, looking for a company that might sell them. I think I only came across one company, but they didn't really provide the detailed information on their website that I wanted. I think I eventually started doing internet searches for "Crohn's + worms" which took me to hookworms and references to a guy named Jasper Lawrence...

Suddenly, I had all sorts of information about hookworms and its use as a treatment for Crohn's. Nightly, I read as much as I could find and understand. I discovered that hookworms were not worms at all, but are properly described as helminths (which is a lot harder to say, but less disgust-invoking than the word worms). I found out that a population of Necator Americanus can not multiply within a human body, but the life cycle requires the eggs to leave the body. I also discovered that in small doses, a population of hookworms will not suck me dry of blood and iron. My fears were laid to rest enough that I decided I would try it. Of course up to that point I had been reading information from companies that sold helminths and scientific papers that had been written by people who only spoke in cold hard data. I wanted to know about actual experiences of real people; people who would provide insight into the good and bad of this crazy therapy I was considering.
Fortunately, I began finding blogs and discussion boards filled with people I could relate to. While the raw data pointed me toward an acceptance of the possibility of helminthic therapy, it was the real stories that helped me to decide it was something I wanted to try. Without knowing it, the community of helminthic bloggers said to me, "Come on in, the water's fine." In a couple of weeks I'll be making that plunge again, going out of the country to receive my second dose. A dose that I hope will provide me with that extra nudge toward healing.

If you're like I was and not quite sure you are ready to jump in, then I would suggest in addition to reading as many research papers on the topic, you join this Yahoo group:
http://health.groups.yahoo.com/group/helminthictherapy/
I've referenced them before, but only to a couple of comments posted on the discussion board. This group is made up of both people who are trying helminthic therapy and people who are thinking about it. You can also read a lot of good articles that are archived at this link. Good luck and if there is anything I can do to help you feel more comfortable about taking that leap, I'd be happy to talk to you.

What's in a name?

2010-05-13T21:36:00.000-05:00

I've made reference to it before, Crohn's disease has a genetic aspect to it. Last year, a study was published in which scientists identified a gene that increases the chances of someone developing the disease. If Crohn's is tied to genetics, then can geneaological research provide any answers? As an aspiring science fiction writer (a lot more day-dreaming than actual writing), I like to ask "what if?" I also enjoy a good backstory and the enrichment it applies to later events. So bear with me, as I creatively hypothesize...

In tracing my family tree, I know that over several generations many in my family were farmers. I'm not sure if a genetic line can be affected in just a few generations, but it is interesting that "my people" would have been constantly exposed to animals, soil, and the parasites that come with them. What's even more interesting is what you find when you attempt to discover the origins of my surname, "Stokes." One source suggests that the name "Stokes" comes from those that lived near an out-lying farm. This same source places the Stokes in England around the end of the 13th Century. That's at least 700 years of fighting with parasites. Of course, the Stokes lineage is only a portion of my genetic make-up but it does make me wonder how long this Crohn's gene has been there.

I hope one day soon, doctors are able to use our DNA to determine what treatment and diet is most effective for an individual. "Individually-tailored healthcare: it doesn't just look at your symptoms, it looks at those of your ancestors too!" Hopefully, more doctors will also enjoy a good ancestoral backstory.

P.S. I also love a story with elements of conspiracy, shadowy figures, etc. So I couldn't help but get a little excited when I noticed on my "Lijit" map (at the bottom of my blog page; it's a neat way of seeing where in the world people are reading my blog) that someone from Washington D.C. had visited my blog 42 times in one day. I wonder who that could be?
Dear avid D.C. reader, feel free to contact me personally and I will be happy to tell you how effective helminthic therapy is. Heck, if you're ever in the area I'd be glad to have you over for supper. I grill an awesome pork loin.

Have Passport, Will Travel

2010-05-06T21:47:00.000-05:00

My passport arrived today! It only took 3 weeks, so I'm glad I didn't pay $60 extra dollars to have it here in 2-3 weeks. For only the cost of shipping, I can receive another dose of hookworms from Autoimmune Therapies. I just have to coordinate my travel plans with the company, because thanks to the infinitely-wise FDA, hookworms are no longer available in the U.S. Looks like it will be off to somewhere in Canada so I can receive another dose. I've been to Toronto twice, so I'd like to see another part of the country. Anyone know of any good tourist destinations there?

I'm hoping to do this sooner rather than later since I'm still unable to eat anything with fiber without having diarrhea. Ever since I had that stomach virus a couple of weeks back, my gut has been a lot more sensitive. If the Humira was working (especially considering that I'm taking twice the normal dose) this wouldn't be happening. And speaking of Humira...the cost of a dose of hookworms, which have a "worm-warranty" for 3 years, is about $3,000. The cost of my Humira over 3 years, without the help of insurance, is $156,000. If the cost of good health is $3,000 dollars it doesn't sound so bad does it?

The good news about helminthic therapy continues to spread!

2010-04-29T22:47:00.000-05:00

For my friends on the other side of the globe, particularly Australia and New Zealand, there was a recent broadcast that discussed the beneficial effects of the hookworm. I hope you'll check it out and tell everyone that might be interested. By achieving a "critical mass" of public interest we might be able to get the medical community to finally take an honest look at helminthic therapy.

http://www.abc.net.au/rn/latenightlive/stories/2010/2883972.htm

This week I've slowly made a come back to mixed days of no pain and 2-3 trips to the bathroom a day. As long as I stay away from anything that remotely resembles fiber, I've found that I can avoid pain and porcelain. Until the inflammation in my small intestines calms down, I'll have to continue fighting (and sometimes losing to) the desire to eat just a little bit of that pico de gallo left on my plate of Mexican food.

These are the times that try MY soul

2010-04-23T09:04:00.000-05:00

In my last post I mentioned the awakening of the violent "dragon" sleeping in my gut. Last Friday night I confirmed my suspicions and shifted to a liquid only diet. After four days of visiting the bathroom 36 times, enduring that wonderful stabbing sensation in my side, and 6 days of eating nothing vegetable nor animal, I finally had a chicken fajita yesterday. No torrential movements occured as a result, so I think I have managed to calm down the inflamation. I am still having the occasional pain in my side, but it's now more of a blunted object stabbing, rather than a samurai sword.

In the past when I have had a flare-up, I usually would fix it by getting back on Prednisone. This time I did it without Prednisone and in a much shorter time period. I have a hypothesis as to why I was able to do this. If the hookworms are like every other living organism on this planet, they respond to stimuli. When my immune system went into overdrive and began attacking everything within the vicinity of the stomach virus I had on Wednesday, the hookworms responded by increasing the amount of immune-suppressing chemicals to nullify any attack.

I don't completely understand the chemical process involved in helmnithic therapy, but it makes sense to me that the hookworms would be able to self-regulate their chemical output in response to how much is needed to respond to the host's immune system since every human host would have varying levels of immune system effectiveness. If my hypothesis is true, then synthesizing the immune-suppressing chemical the hookworms produce will be much less effective because a dose would have to be adjusted everytime a person's immune system fluxuated its response. The only way I know my immune system is fighting something is after I have exhibited external symptoms. The hookworms, as the recepients of an immune system attack, would be able to respond much quicker - especially if you consider that I would have to contact a doctor, schedule an appointment, then pick up a dose of worm juice from the pharmacy.

Unless self-regulating nanobots capable of injecting immune-suppressing chemicals directly into the Crohn's diseased area become a reality, hookworms still seem the best option. Besides, everybody knows robot armies will one day enslave humanity, not hookworms.

The Liquified Purging of My Soul

2010-04-16T14:38:00.000-05:00

I've come to imagine the Crohn's disease in my small intestines as a huge fire-breathing dragon, scorching and destroying everything that gets in its way. It will calm down for a time, but seemingly the smallest thing can awaken it to more violence. So in order to prevent the total destruction of my gut, I've brought in "dragon-wranglers;" my 30 hookworms. Their job is to calm down the dragon to the point of deep slumber, where it can do no harm. Unfortunately, everyone knows dragons sleep on treasure. So whenever a thieving hobbit (or a stomach virus) shows up and wakes the dragon, I have a problem.
On Wednesday, I had what normally would have been a 24-hour stomach bug, producing your average case of sleep-interrupting diarrhea. Not to be outdone, my Crohn's disease had something far greater in store for me last night and today.
Thank you Crohn's Disease, for allowing me to see what a human soul looks like.

In other news, I've applied for a passport so I can visit another country to receive an additional smaller dose of helminths. My gang of 30 need some help putting the dragon to bed at night.

Hookworms Lead to... Higher Iron Levels?

2010-04-08T20:48:00.000-05:00

I received the results of my most recent blood test last week, 6 months after infecting myself with hookworms. For those concerned that the blood loss caused by the hookworms could lead to anemia, don't worry. My 30 or so hookworms aren't even noticeable in that area. In fact, a healthy individual has to be REALLY infected to worry about anemia, which isn't possible in the U.S. (Unless you intentionally infect yourself with large doses OR after infecting yourself with hookworms, you regularly play in your own poop at the right point in the life cycle of the hookworm. If the latter is the case, anemia is not your biggest problem!) My pre-hookworm blood test revealed that I already have a slightly higher than normal red blood count. 6 months later, my count is even higher! Apparently, I've got plenty of the stuff to spare for the little guys crawling around in my belly.

Eventually I plan to compile all of the data from my various blood tests into one source so that I can track any changes. For now, I'm going to list my results from before I was infected and then around 6 months after I was infected for a of the few categories. Check them out below:

Expected range red blood count: 4.1 - 5.7
Expected range hemoglobin: 13 - 17
Expected iron, serum: 35-158
Expected iron: 65-175

Pre-hookworm Luke
red blood count: 5.73
hemoglobin: 17.59
iron, serum (not sure if this is different from just "iron"; I may be comparing apples to oranges): 124

6 months after infection
red blood count: 6.05
hemoglobin: 17.92
iron: 210.18

Of course, my academic degrees are in the areas of psychology and religion, not in any medical field, so I could be reading the data all wrong. Any expert advice is welcomed!

A Message from the Collective

2010-04-01T21:55:00.000-05:00

We, the Collective, have now taken control of the being known as "Luke." Our goal is nothing short of world domination. Just as we have invaded this body, we will also infiltrate your culture and conquer you. Upon taking control of our host, we planned to utilize his superior strength and intellect in our quest for your utter defeat. Unfortunately, we have been faced with delays in our schedule for the enslavement of humanity. This body, of which we have total control, tires far too quickly for our original plans. Additionally, he is distracted too easily to apply the intelligence we desire. We are plotting a new plan for your destruction that will include his strengths: the ability to surf your "internet" for hours upon end with no signs of exhaustion nor any meaningful accomplishment, the uncanny ability to graze upon food matter whenever it is available, and a collection of knowledge of a far away galaxy that is inhabited by a creature called a "wookie."
The time will come when these qualities will be our weapons for your annihilation. Until then, we await quietly, hidden within the bowels of this unsuspecting creature where we gain pleasure from the fear that now grips each of you.

Your superiors in everyway,

The Gang of Thirty

Peek-a-boo!

2010-03-23T21:26:00.000-05:00

Many who have experienced it say that the prep is the worst part: a time filled with anxiety, sleep deprivation, and a level of suffering that could only have been created by a sadist. Leading up to it, you are given a glimpse of what you are truly made of. Sheer determination is the only thing keeping you from bolting for the door, vowing never to go through this again. During the moments between the waves of torture, mental images of your impending invasion of privacy spike into your brain. Just how many people will see you at your most vulnerable time? In the back of your mind, a little voice chants the things that are bothering you most, "Will they find anything? What if something goes wrong?" Before you realize it, the moment has arrived. It is time to begin...the audit.

We had our annual audit at work yesterday and I have decided that there isn't much difference between an audit and a colonoscopy. The only real difference between these two torturous events is that you are allowed to sleep through a colonoscopy! So the next time you are preparing for a colonscopy, just remember: It could be worse, you could be getting audited!

Thankfully, the recent stress doesn't seem to have negatively impacted my gut nor caused my Crohn's disease to flare. I think I'll credit my hookworm colony with that win.

6 Month Anniversary

2010-03-15T21:52:00.000-05:00

It has now been over 6 months since I infected myself with Necator Americanus. Before I began this experimental treatment, my twice a month Humira shots had begun to lose their effectiveness. Pain in my lower right side was a daily occurrence. In an attempt to regain a remission of my Crohn's Disease, my GI doc put me back on Prednisone and increased my Humira to once a week. Today I'm still taking the Humira, but no Prednisone. This past week I didn't feel any pain in my side (except for the pain caused by a couple of poor dietary choices - too much sugar). I should have had plenty of stress to trigger the pain since I chaperoned a 7 day trip with an 8 hour drive for a group of college students. I'm hoping this painless week is another indication that the hookworms are continuing to work. I'm planning on scheduling a blood test some time next week to give me a better idea of what is going on inside of me and to send to Autoimmune Therapies for their records.

Slowly But Surely

2010-03-02T20:21:00.000-06:00

I continue to experience days at a time with no pain in my lower right side. On the days that I do have pain, it's only a quick jab to my side and then it is usually gone within minutes. I can definitely see a correlation between eating foods that contain any amount of fiber and the appearance of gut pain. I even have to avoid one of my favorite fajitia toppings: pico de gallo. If I avoid fresh vegetables, I seem to do well. However, even by avoiding roughage, I have had rather busy bowels of late. Sunday I found myself taking 6 trips to the toilet, with Monday seeing a reduction in frequency. There has been a stomach bug going around and I also ate something different on Saturday, so it is really difficult to say what the source of my porcelain excursions might be.
I'm now approaching month six of my hookworm infection and I'm taking a Humira shot once a week. The Humira lost its effectiveness back in May, so at this point I'm pretty sure I'm just paying for someone's retirement. Once I reach 11 months of infection, I plan to consult with my gastro doc to begin backing off the Humira. Until then, I'll just keep pumping $1,000 into my belly each week. There better be a bronze statue of me over at Abott Laboratories...or at least a building named after me.

Oh So Delicious

2010-02-15T10:09:00.000-06:00

Soon after beginning college I found that some foods did not sit with me well. Given the quality of the cafeteria food, I just assumed that was the source of my problems. I visited various doctors seeking to find out what was going wrong. I even went to one of the "best" (as he described himself) gastro docs in Savannah, Georgia. His solution was that I take around 5 pills a day to prevent cramping. The cramping went away, but the diarrhea began happening within two hours of taking the pills. He also put me on acid reflux medication. When I asked the Savannah doc how long I would have to take this "purple gold" for my heartburn, he said the rest of my life. I refused to accept that diagnosis and began looking at alternatives. Located in a small town in south Georgia, I found a Gonstead Chiropractor. Within a couple of months, I was off the acid reflux medicine and never went back. Of course, I still had the cramping pains, so that mystery remained. It wasn't until around 2005 that my Gonstead chiropractor in Round Rock, Texas suggested to me that I might have lactose intolerance. Suddenly it became clear: dairy had always been in my diet when I had the worst intestinal problems. I tried Lactaid, but my level of lactose intolerance bordered closer to lactose bigotry. It was so bad that I'm pretty sure if a milk truck drove past a garden, I would not be able to eat the vegetables harvested from there. Lactaid only really worked for foods that might have been flavored with butter. Even then I had to take more than the recommened 1 or 2 Lactaid tablets.
After I discovered that I was lactose intolerant, I was forced to give up one of my favorite foods: pizza. It's been more than 4 years since I had my last bite. On Saturday I ate four slices of ham and cheese pizza (with the help of 4 Lactaid tablets just in case). I've never been one to close my eyes and dwell on a first bite of food, but this time I did. I felt like Tom Hanks when his character managed to find salvation from the island in "Castaway." The only reason I attempted this potential dietary torture was because I didn't have work on Monday, so I knew I would have plenty of recovery time. It's now Monday and while I thought I might have had problems yesterday, none occurred.
Can I thank my hookworm colony for this change? It's been over 5 months since I first infected myself. In the last two weeks I've once again seen more days of no pain than days with pain.

hookworms become movie stars (sort of)

2010-02-01T22:14:00.001-06:00

In the week since my last entry, I have had mostly days with minimal pain and a couple of days with none. I also find my once a day bowel movements somehow abnormal compared to my once seemingly permanent residence on the toilet before. Is this how normal people see the bathroom? Not as a second home where novels are read in only a few days but as a brief moment of their day. So now I find myself cautiously hopeful for what this change might mean. And speaking of encouraging news...

Recently, I came across a posting in one of the message boards that I read in which someone made mention of an upcoming documentary on helminthic therapy. The name of the doc is: "Parasites: A User's Guide" by filmaker Sharon Shattuck. I checked out the website associated with the film and this person seems to have done her homework. Under the link "helminthic therapy" you will find all sorts of information related to this treatment. This is very helpful for those of you wanting more information. You can also watch a trailer for the upcoming film. It looks like Sharon has a very fun style, which will hopefully make the topic of helminthic therapy very easy to understand. It should make a great conversation starter. I hope everyone will spread the word about "Parasites: A User's Guide" to anyone who might care (and to a few that don't).

Thank you Sharon!

The Success of Others

2010-01-24T08:13:00.000-06:00

Friday and Saturday I found myself having no pain! I didn't want to acknowledge my painlessness for fear of somehow undoing it. Ridiculous I know. I'm now approaching week 20 of my hookworm infection and hope to see my gut pain fade the rest of this year. While it is easy to get discouraged and impatient, it helps greatly knowing that others with Crohn's have found success with helminthic therapy. Here are two of those accounts, the first of which is a fellow blogger, who I have listed on the left of this page:

http://health.groups.yahoo.com/group/helminthictherapy/message/3819

http://health.groups.yahoo.com/group/helminthictherapy/message/3795

Oh, the Horror!

2010-01-18T08:34:00.000-06:00

Other than the threat of bullies and the fear of standing out in a crowd, my two greatest fears in my first year of high school were passing kidney stones and being infected by some sort of skin-piercing parasite. Both of these fears were born in health class at school. I can still see the magnified photos of roundworms and hookworms with fangs and jagged teeth. We were told stories of tapeworms that at one time were removed by starving the victim and then placing bacon on his tongue to draw out the perpetually hungry monster (that one still kind of freaks me out!). I can remember taking my dog to the veterinarian and looking at the model of a dog heart that was covered with heart worms, appearing more as a tangled white ball of yarn than a functional organ. So I find it a little humorous that one of my greatest fears now is that I might somehow kill off the hookworms that are living in my small intestines. Of course, if they were easy to kill accidentally, 700 million people around the world would not have them.

What once tormented me as a nightmare, now gives me cause to dream.

After 6 days of a 20 mg run on Prednisone, I've finally had some slight relief to the dull pain in my side. How much of my pain reduction is due to the Prednisone, a placebo effect, the fact that I'm having a 3-day weekend, or even the hookworms? I don't care. I'm just glad for the relief.

Another Thorn in My Side

2010-01-14T07:12:00.000-06:00

The pain in my lower right side has been gradually increasing in frequency and intensity over the last couple of weeks. On Monday, it was strong enough that I considered going home from work, but somehow managed to make it to 5 pm. I have a fairly high tolerance of pain and on a scale of 1 to 10, this is a about a 6. But it's the constant pain that seems to be wearing down my ability to ignore it. I'm still holding on to the hope that the hookworms can help me; they just need more time. So I decided to hope back on 20 mg of Prednisone for 6 days. I'm not expecting any kind of remission from this short burst, just buying time.
I've said before that the "gross factor" is one of the biggest obstacles for people who might try helminthic therapy. For people with Crohn's, another obstacle might be how long this treatment takes to work. It's no wonder America's entire health care system is focused on treating symptoms and not the actual cause of illness. Stop the symptoms and you make the patient happy quickly. Leave the cause and you can continue treating the patient for those symptoms indefinitely. At least until they get cancer, but then you've got a whole new set of symptoms to treat. What a great business, huh?

I was dosed with 30 hookworm eggs, but if things don't work soon, I may consider increasing my colony. Now to figure out the logistics of getting them from outside of the U.S.

The combination of perpetual pain and a "Prednisoned" mood have left me a little grumpier than usual. So I'll need an extra load of patience if I expect to engage other people in a civilized manner, especially as I continue to do my work as a social worker with the 55 and older demographic.

A Call of the Wild

2010-01-06T22:37:00.000-06:00

With a beard on my face and parasites in my gut, my inner caveman hears and responds to the beckoning of the wild. The cold wind and darkness of pre-dawn seek to discourage me from going, but my clan needs food and so I must hunt. For seven hours a member of another clan and I track, stalk, listen and even crawl in search of our prey: the mighty and ever-cunning...squirrel. While the miles of seemingly endless thorns did not defeat us, the bushy-tailed beast surely did. Of course, in the end even the sly squirrel was no match for the hawks from above.

There is nothing better for forgetting the worries of modern life and placing your mind in the "here and now" than wandering the woods for a day. Thankfully, in spite of my inept hunting skills on Monday, I am still quite good at finding and consuming the readily available junk food of 2010. I don't recall having any abdominal pain that day. Although it has returned a little yesterday and today. I think my pain resurgence could in part be attributed to the stress of last week. Once the week finished I realized just how burdened I had been. I just need to keep my stress down for the next 3 weeks as I approach week number 20 on the hope that my hookworms can reduce my gut inflammation.

On an unrelated note, I found this article today about a study on autism. Researchers in California discovered clusters of autism cases located in neighborhoods with highly educated parents. If autism is a neurological autoimmune disease, then the Hygiene Hypothesis might help explain these clusters. Just a thought. Here's the link to the article.

http://abcnews.go.com/Technology/wireStory?id=9492635

"Never Tell Me the Odds!"

2009-12-30T22:58:00.000-06:00

About 500,000 Americans have Crohn's disease. That's 500,000 out of over 300 million. Of those with Crohn's, it's estimated that 30% are lactose intolerant. I fall into both of these categories. So when I first began my research into helminthic therapy and was told that 9 out of 10 of AIT's clients with Crohn's responded positively, that negative 10% still looked rather large. And given my track record of short-term results with medications, I was hopeful, but also mentally prepared for more bad news. As of today, I've been infected with hookworms for 16 weeks. I'm told that if I am to see an effect, it will begin between 12-20 weeks, depending on what illness I have. At around 10 weeks, I actually noticed a couple of days without pain. This pattern continued until last week I had 5 straight days of no pain! The science of helminthic therapy makes sense to me, but I finally was starting to see proof for myself. On Christmas day I took my last Prednisone pill and on Saturday I began having a pain in my side for only a short time. However, yesterday I had pain most of the day. Today I had pain for a shorter time, but pain nonetheless.

I'm hoping it's somehow stress-induced, given that I've been teaching a class the last couple of weeks (Not my normal routine). If my pain continues through this weekend then I might begin worrying again about my ability to beat the odds so easily. By the end of the next four weeks, as I approach week 20, I am going to know if my anxiety has merit.

Hopefully the last Prednisone rant

2009-12-15T21:07:00.000-06:00

When I started this blog, I assumed I would be writing about the terrible side effects brought on by my hookworms, which are not FDA-approved. Instead, I find myself writing about the joys of that FDA-approved manifestation of the "dark side", also known as Prednisone. As I begin my last couple of weeks on Prednisone, I thought I would cut it some slack and mention the things I'm going to miss about my steroid from Hell. The most obvious is the ability to knock out inflammation, mainly in my gut, but also elsewhere. I'm now at 5 mg every other day and one of the benefits of a higher dosage that I had forgotten about was its ability to control acne. I suppose it's the suppression of my inflammatory response that cuts down on the breakouts. I remember the last time I left Prednisone, it gave me with a couple of weeks of zits whose origins must have emanated far below my skin, from the depths of my soul. Thank you Prednisone for giving me great skin for a time...and then trashing it with "Gremlin-esque" pods. I also had forgotten that when I'm on more than 20 mg of Prednisone, I don't sneeze - ever. I never remember this at the time until my dosage drops and I sneeze for the first time in months. Finally, my favorite of all the gifts of Prednisone is its ability to put me mentally into the upper atmosphere. Both my creativity and productivity are elevated beyond my normal ability. Of course, in a matter of days I find myself plunging from the clouds, downward to a deep ocean of depression. But the view on top is nice while it lasts.

So thank you Prednisone for the small benefits you provide. It's almost enough to distract me from all the potential destruction packed into those small little pills...almost.

Yo Estoy Aprendiendo Espanol

2009-12-08T07:13:00.001-06:00

It looks like my efforts to learn Spanish are going to come in handy the next time I need to receive another dose of hookworms. I don't know the exact location, but it seems the company from which I bought my helminths is setting up shop somewhere south of the border. I'm glad it's there and not somewhere on the other side of the globe. Of course, it also helps that I love Mexican food!

I continue to find myself with less days of pain and more days of "normal." I've since tapered down to 5 mg of Prednisone and continue to take Humira once a week (which would now cost me $1000 a shot if I didn't have insurance - that's up from $400 two years ago! If the price went up that much on water during a natural disaster, people would be sent to jail for price-gouging.) Taking advice from several of you, I slowed my Prednisone taper and have found very little withdrawal symptoms other than the occasional mild depression. I'm also finally at the point where I'm starting to produce my own adrenaline. Of course, my body still seems to be unsure of what the proper dose is for each situation. My heart nearly exploded out of my chest the other day as I was anticipating speaking to a small group of people. I guess my over-the-top adrenaline production makes the little things seem a lot more exciting than they really are. Who needs sky-diving when I can just step out my front door and get a rush!

When are we going to learn?

2009-12-01T08:51:00.000-06:00

The title of the article is "Device spells doom for superbugs," but I think a more appropriate headline would be "Device spells doom for humanity!" (http://news.bbc.co.uk/2/hi/technology/8379604.stm)

Researchers have created a device that uses plasma to kill bacteria, viruses, and fungi while it does no harm to human skin. The hope is that it will allow wounds to heal faster and allow hospitals to rid themselves of superbugs like MRSA. However, in the article they also mention handheld devices, which can easily be marketed for personal use. If you thought our obsession with hand sanitizer was bad, wait until the newest "bug zapper" device is available!

Imagine a football team that goes an entire season without playing a single opponent and never even has a practice. At each game, the other team forfeits. At the end of the season the lucky football team is undefeated and heading into the playoffs. Once in the playoffs, this team again is faced with forfeiting teams, advancing them all the way to the championship game. An undefeated record and ready to play for the title, what a great season! Unfortunately, in the last game the other team doesn't forfeit, but plays as hard as they have been playing all season, leaving that "lucky" team with not just a loss, but a team full of injured players. Our bodies are like a football team that can't just depend on luck to survive. Our immune systems have to practice and even have a couple of tough games to make them stronger for the day when we might have to play against an extremely tough opponent.

Finding ways to fight against bugs for which our bodies have no defense is a great medical breakthrough. I'm just fearful that once again the researchers are working with their heads down and not paying attention to any of the consequences.

A Time of Thanksgiving

2009-11-27T22:40:00.000-06:00

Even though I use the internet everyday, I am very thankful for the last three days of being without a computer. This could only be accomplished by going camping...far, far away from internet access. When I crawled out of my sleeping bag this morning, far from any resemblance of "Black Friday," I was not standing amidst a sea of greedy humanity up before the crack of dawn. Instead I found myself looking across a fog covered lake, bathed in the first light of day. So often our list of thankfulness focuses on what we already have. As I watched and photographed the sunrise today, I thought about how the morning sun can be a symbol of hope. During this time of Thanksgiving, I am reminded not of what I have, but of the possibilities that lie in the future. As I continue to experience less Crohn's related pain, with the help of my hookworms, I have many possibilities for which to be thankful.

Here are a couple of shots of this morning's sunrise:

http://lukeslens.blogspot.com/2009/11/thankful-for-sunrise.html

More support for the hygiene hypothesis

2009-11-23T07:30:00.000-06:00

Researchers from the School of Medicine at University of California, San Diego have found that a certain type of bacteria can prevent an inflammatory response that can lead to allergies. The article has been published in "Nature Medicine" (http://www.nature.com/nm/journal/vaop/ncurrent/abs/nm.2062.html). It gives more support to the hygiene hypothesis, so hopefully the medical community will find it more difficult to continue ignoring reality. Here's a link to the BBC article, which is much easier to understand than the abstract at Nature Medicine: http://news.bbc.co.uk/2/hi/health/8373690.stm.

If anyone knows someone at the school in San Diego, that might be a good start for generating interest with helminthic therapy research.

In other news, I've now been on 10 mg of Prednisone for two weeks. I continue to have multiple days of zero pain and as soon as I see a week of no pain, I hope to begin tapering down the Prednisone further. I'm afraid to remove the Prednisone too quickly, because I might eliminate any ground I have gained against my intestinal inflammation. A fear confirmed as I had a brief bout of diarrhea yesterday, the first since August. The only thing more annoying than the 4 or 5 trips to the bathroom is not knowing the cause of it. It could have been my usual Crohn's routine, the hookworms, a food-borne illness, the flu, or even dairy products that made it into my food. Since I had no idea what to treat, I just let my body do what it is made to do and then supplied it with lots of water. I'm still alive this morning...and not sitting on the toilet, so I guess I made the right decision.

No pain, no gain or... No pain, again

2009-11-17T20:13:00.000-06:00

When I started having Crohn's-related pain shoot through my midsection last night and randomly throughout today, I realized that I have not really had any pain the past several days. Just to be sure, I checked my entries in my iPhone journal (yes, there is an app for that - http://wellapps.com/). According to my daily logs, I have had little to no pain since Thursday! It's amazing how quickly you can forget about something until the pain returns. It's been nearly 10 weeks since I invited the hookworms in and I still have a long way to go before I see relief from my Crohn's. It's as if I'm sitting on the hot sand at the beach, watching the tide slowly come in. Seemingly inch by inch, each cool wave brings relief to my sun and sand seared body. Some waves don't reach as far as others. Nonetheless, I know the tide continues to rise. In about two more months I hope to be sitting in that cool water, with the searing pain becoming a fading memory.

In case you missed it, the most recent episode of "House" brought up the Hygiene Hypothesis and helminthic therapy! I haven't seen the episode, but intend to watch it when it becomes available online Sunday night. You should be able to watch it on Hulu or on Fox.

The Helminthic Railroad

2009-11-14T15:27:00.001-06:00

Well, the FDA, in all its infinite wisdom, has decided to shut down AutoimmuneTherapies.com. Out of a desire to continue treating their patients, the company is attempting to relocate outside of the U.S. Unfortunately, for those of us who still live in America, receiving any future hookworm treatments will mean a trip to another country. So I guess I should thank the FDA for ensuring that I will be taking an international vacation in about 3 years.

I supposed the FDA's reasoning is that helminthic therapy hasn't withstood the rigors of clinical trials. Because we all know that clinical trials are the purest of science...http://bit.ly/2PrOKy. The more I think about it, the more I realize that there is not much ethical difference between many of the current clinical trials and the experiments performed in the field of Psychology in the early 1900's. To this day I'm both intrigued and haunted by the story of "Little Albert." If you have exhausted all of your treatment options, the initial offer of enrolling in a clinical trial sounds like an excellent opportunity. You are given a chance to use a treatment that could be years from being on the market. It is with that desire for hope that Big Pharma hooks you. They don't actually care about your well-being. They only want to create a product that will sell. Who cares about the side effects? They will gladly sell you a drug for those side effects too!

With each new drug I have tried for my Crohn's, I realize more and more that in the end it is about profit. Why else would my Humira go from $400 a pen to $900? Has the down economy really caused the price to more than double? Shouldn't it be getting cheaper to make as the they improve the methods of production? Or could it be that they are trying to run up the price as the patent will soon be running out. And so the doctors, most of whom desire to help their patients, become pawns, offering hope for patients and the potential for billions in profit for the pharmaceutical companies.

If hookworms do ultimately offer a remission to my Crohn's disease, then I feel sorry for my fellow citizens who have been banned from a chance for freedom from their pain. Of course, this isn't the first time a government has attempted to deny its people freedom and I'm sure it won't be the last. Maybe I'll set-up a modern-day "Underground Railroad," offering hope and freedom to those that need it. I have to admit though, this railroad doesn't have the same allure as being freed from slavery. "Come get infected with hookworms" doesn't entice like "come be free!" We'll see how many takers we get.

The railroad starts here in the discussion board of this Facebook page:
http://www.facebook.com/home.php#/pages/Helminthic-Therapy/7587508932?v=app_2373072738&ref=sgm

The Right to Bear Worms

2009-11-09T07:37:00.000-06:00

I found out last night that the FDA is currently looking into "Autoimmune Therapies," the company from which I received my helminths. AIT's website is currently down and they are not allowed to provide anymore treatment for the time being. With the recent media coverage of helminthic therapy, http://www.facebook.com/pages/Helminthic-Therapy/7587508932 (you can find various videos on this Facebook page), it was inevitable that the FDA would finally take notice. My hope is that this is standard procedure and that when the FDA sees that there is no harm being done, they will let Autoimmune Therapies continue providing hope and healing for people in pain.

Last I checked, I have the right to Life, Liberty, and the pursuit of Happiness. Untreated Crohn's disease and Crohn's treated with cancer-causing FDA-approved drugs will shorten my life. As an adult, I am perfectly capable of making decisions for myself and accept full responsibility for my decisions. I did my homework. I read the research and weighed my options and helminthic therapy was best option I had. Nothing about Crohn's disease creates happiness. By finding a treatment that brings my Crohn's disease under control, I am pursuing happiness. FDA, back off my unalienable rights!

If things turn out badly from the FDA visit, I plan on becoming an uber-advocate for helminthic therapy; every relevant Congressman (an oxymoron?), every autoimmune disease support group, and even the medical community will be getting letters from me. We need people of influence to at least know about this very real and very positive treatment for Crohn's disease and other autoimmune diseases.

P.S. My letters to Congress, et al., will hopefully be more articulate than this post. I'm writing through the lens of frustration and Prednisone withdrawal!

Breaking Up Is So Hard To Do

2009-11-05T07:23:00.000-06:00

I've been reading about tapering off of Prednisone, which I thought I already knew about. Apparently there are some that recommend tapering down in very small increments, as in 4 milligrams down to 3 milligrams, etc. Bunch of wimps. With my doctor's approval, I just dropped from 20 to 10 and am on my third day of it. The withdrawal symptoms greeted my with open arms this morning. I guess the good news is that the aching joints and throbbing headache are a distraction from any pain that might occur in my gut. As I begin to tear my body away from its dependency on this drug, that I'm pretty sure Hitler invented, I hope to see if the worms have started to help at all. Since I'm on two types of drugs that can suppress Crohn's symptoms, I don't know if the worms have been doing there thing. I'm still taking Humira once a week and anticipate continuing on it for as long as I need to or as long as it continues to work. I don't want to do anything that might jeopardize my parasitic residents, but I also know that continuing to pump my body full of these drugs has too much potential for harm. I just hope that the Humira will be enough to keep my immune system from serving an eviction notice to my worms. But first I must perform an eviction of my own. "Prednisone, it's not me, it's you."

Goodbye darkness, hello sunlight

2009-11-01T21:20:00.000-06:00

Every time I've taken Prednisone I've experienced mood swings that could likely get me diagnosed with bipolar disorder. I usually experience about a 3-4 day swing from low to high as I'm adjusting the dosage of my Prednisone. But since I've been on 20 milligrams for about 2 months now, my moods seemed to have leveled off. So I was somewhat suprised by what happened today.

This past week I have been in a weird funk; sort of an emotional Purgatory between the Heaven and Hell of mania and depression. Not happy, not sad, just here. This "in between place" rarely lasts longer than a day and is always my indicator that I'm about to lose all motivation. That came on Thursday, Friday, and Saturday. From past experience I know that moving out of a depressive state is a gradual process, but this was taking longer than usual. All week it has felt as if I was piloting an airplane whose engines had been cut and was now losing altitude, going lower and lower with nothing for me to do but brace for impact. I even considered taking an extra Prednisone pill to try to rattle my brain chemistry into changing. Up or down I didn't care. I just wanted to break free of this slow, methodical march toward the bottom.

The brain is an amazing thing. It's ability to regulate even one of my body's systems is to me a miracle. I love that it can do this automatically without me needing to put it on a to-do list somewhere or set it like an alarm clock. Since I never got a chance to take an extra Prednisone pill, I can only assume that sometime during the night or early this morning the emotional thermostat in my head powered on. Apparently sensing that I was short on whatever chemicals make you feel normal, my brain opened up an entire vault of the stuff. As I was getting dressed this morning, I actually felt the shift from low to high in a matter of minutes. I told my wife that I was finally exiting the darkness to the tune of "Duel of the Fates", which at that moment was playing rapidly and repeatedly in my head. About 20 minutes later my heart was pounding and that powerless airplane I had been riding had now become a rocket bound for the upper atmosphere. I don't know that I can stand having the same song play in my head for the next 3-4 days, which it's been doing on and off all day, but it sure would be nice to carry this high into the middle of next week. My productivity at work would be incredible!

A Worm Evangelist

2009-10-28T22:57:00.000-05:00

Each time that I encounter individuals who have or know of someone who has an autoimmune disease, it gets easier to initiate the "worm conversation." As each of these people begin to relate to me how difficult their lives have become as they watch both the disease and the treatment ravage their bodies, I am able to understand their pain and feel an overwhelming desire to help. I silently tell myself that if I can not alleviate their physical suffering, then at the least I can offer them hope. It seems that those who have run out of options for treatment seem most willing to listen to my fanciful tales of magical worms. But when I receive nothing but a blank stare or even disdain I've learned to finish the conversation quickly and move on. My preaching this gospel of worms has also been a great test of friendships; those that appear to be interested in what I am saying I count as friends, while those that run away shrieking...not so much. So to all of my friends who have at least acted like you are interested in the tale of my worms and to those who need a little hope, I'm inlcuding an article that offers a good summary of why this treatment might just work.

This article is entitled "Parasitic Worms and Inflammatory Diseases." (Notice the 73 references at the end - they've done their homework!)
http://www3.interscience.wiley.com/cgi-bin/fulltext/118610060/HTMLSTART

If anyone is interested, I have other articles (some a little easier to read than this one) that I would be willing to share; especially if it leads to your conversion and accepting worms into your heart...er, I mean gut.

THIS IS SPARTA!

2009-10-25T22:01:00.000-05:00

Popularized by the movie "300," the Battle of Thermopylae tells the story of a small army that attempted to defend the rear-guard against an advancing Persian Army. As the movie reimagines this battle, the audience is left holding onto the hope that the Spartans will somehow survive the ensuing bloodbath. In the battle that is being waged in my gut, I find myself cheering for the small army of 30 worms that I've allowed into my body. Up until now, the battle seems to be going well. There are some days of little to no pain and other days I experience mild to moderate pain in my lower right side. I just hope that in this conflict the Persians will give up and go home sooner rather than later.

Now Showing: "Unhooking the Hookworm"

2009-10-20T22:37:00.000-05:00

Saturday was a good day. I had zero pain or even fatigue, which meant that I was able to accomplish plenty of projects around the house. It's amazing how pain can affect productivity. On Sunday and Monday I had what I would call a couple of episodes of "pain echoes." They didn't last very long and didn't really hurt either. It was just a passing sensation that reminded me of pain. Unfortunately, the pain has started to return gradually tonight in my lower right side. I had to travel for work today, so I ended up eating Mexican food for lunch - flour tortilla included. I know I'm supposed to be eliminating gluten, but that dish looked so good! I don't think I'm a glutton for punishment; maybe just a glutton.

Speaking of punishment, pain, etc, I found the informative ten minute anti-hookworm movie, "Unhooking the Hookworm," pushed in the 1920's. It's a silent film, so don't bother with the sound. Don't watch it if you are freaked out by creepy-crawly things. Remember, the film was meant to get people to change their way of life - what better way than to scare them to death. The symptoms they are talking about mostly occur in heavy infestations (which is what happens when you run around an outhouse bare-footed all the time). I find it interesting that they offer a warning that hookworms can lead to Tuberculosis, which is the same warning they place on my current medication, Humira.

I'm including this film because I'm fascinated by it both as a piece of history and a window into the science of the 1920's. Enjoy. (You'll need Quicktime to view it.)
http://www.rockarch.org/qt/hookworm.mov

Do These Worms Make Me Look Fat?

2009-10-15T09:26:00.000-05:00

That feeling of having a knife in my side was replaced with a feeling of having someone's thumb jabbed into my side; less painful, but still very distracting. Sometime last night though the pain went away and hasn't been back yet. That's about 14 hours of painlessness. I'll take what I can get.
Unfortunately, when the pain goes away I want to eat all the time. At every painless meal I find that my new motto is, "I'm not full as long as there's still room in my mouth." My guess is that my dear friend Prednisone is handing me another one of it's side effects. I had forgotten about this one. Last night I ate a great supper (baked chicken, potato salad, baked beans, and sauted spinach - which is a lot of variety for me these days), but that wasn't enough for the black hole that has formed in my stomach. I found myself on repeated trips to the kitchen up until bed time. This morning I'm feeling the effects of my binge with what could be described as someone replacing all of my skin with a suit a couple of sizes too small.

I doubt very seriously that my 30 new life forms could affect my appetite so quickly. I don't think that they really ever will. Still it does make one wonder.

I know for some, an increased appetite and intestinal worms are two things that can't exist at the same time. But you have to understand where I'm coming from...when I was a kid living in Sierra Leone, I repeatedly played host to real parasites: the larvae of the Tumbu Fly. This lovely little insect lays eggs in places that are sure to come in contact with human skin. In a little over a week, you get to witness a maggot coming out of your arm, leg, or anywhere else. Ah, the cycle of life. You can imagine how fun this experience would be for a 7 year old. So you see, intestinal parasites, that I have no way of seeing, are going to have a hard time stopping me from consuming most of the planet.

Anybody Home?

2009-10-12T22:08:00.000-05:00

Since my last entry, I've managed to eliminate gluten from my diet and so far I'm not noticing as much fatigue after lunch - although quick naps are always welcomed. I was worried that corn might also be a problem, but after consuming lots of tortilla chips and corn Chex over the last few days, I think I'm in the clear. I've also found that I can eat any meat as long as it is lean. I used to think that chicken was the only one that didn't cause problems during a flare-up. So apparently I don't have a problem digesting meats, just fat. This is very good news, since a vegetarian I am not.

Today I've seen more pain than usual. It was bad enough that it made doing simple paperwork a challenge. It's as if someone has been performing seppuku on me without my permission. It started after 8 this morning and has happened off and on all day, continuing even now. I'm thinking it might have something to do with my swinging a sledge hammer early this morning (random, I know). It doesn't feel like a pulled muscle, but more like intestinal pain. Tomorrow will tell me if it's a muscle pull.

Treating Crohn's with worms is a mixed bag. On the one hand, I'm used to intestinal issues, so whatever problems the worms cause, if any, aren't hard to get used to. On the other hand, the ebb and flow of pain and bloating could be related only to the Crohn's and so a small voice in the back of my brain questions if I have any worms at all. If I hadn't experienced the itching at the infection site, that voice would probably be a lot louder.

A Numbers Game

2009-10-08T21:32:00.000-05:00

I got the results back from my blood test, a month after infecting myself with hookworms. I have no idea what most of the numbers mean, but I do know that my vitamin D and protein levels have dropped further. I would think my increased meat intake will help the protein number. I have been taking about 3 times the recommended amount of vitamin D for about a month in hopes of raising that number since my blood test a month ago. The normal range is 30-60. I'm now at 12. Presumably the dropping number, in spite of my taking more vitamin D than I should, is a result of my inability to absorb anything in my terminal ileum (end of my small intestines). So my primary care doctor has given me a prescription for about 100 times the recommended amount. Surely that will produce an increase! Since it's a new medication, I've not yet gotten used to the schedule for it, which is once a week. I accidently took a second pill tonight on day 2, not week 2. Oops. I wonder if that's why I have a stomach ache right now. From what I've read, Vitamin D toxicity occurs over time and not from 100,000 UI's in 2 days. We'll see. I really don't have room in my life right now for a kidney failure. If anyone knows for sure, I'd appreciate being told if I need to panic or not worry.

I continue to be baffled by what is making me tired after eating. My primary care doc suggested that I keep a food diary for the next couple of weeks and then see if any patterns develop. While I'm still having occasional pain in my lower right side, it does seem to have dropped off in the last month. I don't know if the fatigue after lunch has increased or if I'm looking for it more. Either way, it's there and I can tell it's affecting my energy levels throughout the day. I really don't want to do this, but I suppose I need to consider every kind of food bad for me and begin adding each to my diet, one by one to see what is causing the problem. I guess the good news is that meal planning will be easy. Now, how many different ways can I cook eggs...

"Glutentag"

2009-10-05T07:15:00.000-05:00

The fact that this weekend has come and gone with little signs that I have worms is supposed to be a good indicator for the rest of this parasite trip. The next significant date willl be in about 7 weeks. Once I make it to that date, then I should start to see some positive results. At my present rate of light symptoms, this may be a very boring blog for the next 7 weeks...of course nothing is ever boring on the seemingly ever-deterioriating planet of Luke.
After having a conversation with another person I met who was recently diagnosed with a couple of autoimmune diseases, I realized something. This particular person said that her diagnosis came about after she and her family noticed her severe fatigue. Trying to avoid a touch of hypochondria, I began to think about my own fatigue. For a couple of months now, that includes one wormless month, I have been experiencing an increasing amount of fatigue soon after eating lunch - not the "I-worked-all-day-in-the-yard" fatigue, but that soul-bending fatigue. Nicky confirmed to me that I have been complaining about the fatigue for some time, so I was encouraged that I wasn't just making it up. I began reading about various causes of meal-induced fatigue and came across gluten-intolerance. From the little that I read, gluten-intolerance can develop later in life if the small intestines are damaged. Everyday for lunch I eat a sandwich - that I now know contains gluten. So, this weekend we (Nicky and I, not "we" the worm colony - though I guess they joined in as well) began trying to eliminate gluten from my diet - at least to see if this helps with the fatigue.
Ironically, it was about a year ago that I first began looking into the Paleo diet or Caveman diet (gluten and lactose free) as an option. Unfortunately, I didn't plan very well and decided to start it one weekend; one weekend in which I found myself very hungry and very grumpy. I gave up the diet quickly.
This time around, I'm planning better and hopefully won't get discouraged so easily. While it wasn't exactly the Paleo diet, yesterday I was able to eat my first gluten and lactose free meal out of the house, gorging myself on an array of Texas meats at a local barbeque restaurant. My inner caveman thanked me. God bless Texas.

A Bar Mitzvah for Worms

2009-10-01T22:02:00.000-05:00

It's hard to miss the irony. As I'm writing this an actual thunderstorm is passing overhead. I even went outside and sat on the porch to enjoy its approach; a rarity out here in Texas, since the storms seem to always have a threat of tornadoes with them. Even though my chances for symptoms were high for this week, so far my gastrointestinal storms have not been severe. Still though, I have experienced a few side effects. This week I have noticed a certain amount of fatigue, while yesterday evening the bloating left me feeling as if I had swallowed an inflating beach ball. After attempting for a month to suck in my now Prednisone-enhanced belly, it was strangely liberating to embrace my distended stomach and let it all hang out. I can almost understand why those old men like to stand on the beach with their gut hanging out over their speedos - I said almost understand. I've been to the bathroom a couple of extra times today, though thankfully no diarrhea yet (What?! This is a blog about intestinal parasites, the "d" word was going to happen eventually).

I decided to celebrate my worms coming of age tonight by going out to eat and getting a juicy steak. I'm pretty sure I chose to get the steak and not the 30 voracious vampires in my gut...but who knows. All in all the transition to adulthood has been fairly easy. I guess I raised them right. You know what they say, "Train up a worm in the way it should go, and it will not turn from it..."

A Storm on the Horizon

2009-09-29T22:30:00.000-05:00

One of the things I miss about Georiga, are those times late in the afternoon when it cooled off enough to sit outside on the porch. If you were lucky you got to be there to experience the subtle change in temperature and the beginning of a cool breeze. In the distance, a low rumble of thunder warns of what is to come. As the breeze becomes a sporadic wind and the sunset is shielded by a cloudy veil, flashes of light dance across the darkening purple sky. Oversized rain drops begin to be hurled from somewhere up above. One here, one there. Now two, then three. These random liquid missles fall toward the earth only to splatter harmlessly across the ground. Across a field you can see what you've been waiting for: a white sheet of water marching toward you. The leaves on the trees bounce up and down, fighting the water like a drowning man. The now whipping wind carries with it the refreshing smell of rain and a cool mist on your face. There is not much like an evening thunderstorm in Georgia.

Tonight I sit and wait for a different kind of storm. I've replaced the distant roll of thunder with the occasional rumbling in my gut; the flashes of lightning with shots of mild cramps that shoot across my abdomen.
The storm approaches...

Identity

2009-09-26T19:00:00.000-05:00

Still no notable symptoms to write about, so you'll have to forgive my ramblings...

So little is known about Crohn's Disease, considering doctors have been diagnosing it for over 70 years now. There is general agreement that there is a genetic aspect to Crohn's which predisposes a person to one day developing the disease and then there is some sort of environmental trigger that sets the disease in motion. Where there is some disagreement is in the way to treat Crohn's disease once it becomes active.
Some have suggested that the over-active immune system is a result of bacteria in the gut that should be treated with antibiotics. Others seek to suppress the body's inflammatory response by using drugs that dampen the immune system. However, regardless of the way in which the treatment is delivered, it seems that researchers and doctors always refer to my body as defective. Because I have Crohn's disease, my body is apparently broken.
(Here's a little tip for doctor's seeking to improve their bed-side manner: After being diagnosed with Crohn's most, if not all, eventually find themselves wallowing in self-pity. Hearing that your body is flawed doesn't help make the pity party any shorter!)
Maybe it's merely out of a desire to redeem my own body, but I have a hypothesis on why I ended up with Crohn's disease...
My family tree is rooted in the rural southern U.S. It only takes going back a couple of generations to find farmers in my bloodline; farmers who toiled daily in the dirt. Continuing back further into my ancestry, one will find more farmers, living in an environment contaminated by parasites. Those that had immune systems strong enough to withstand the constant attacks by intestinal microorganisms survived and passed on their genes to the next generation. Then I come along and inherit a genetic package that has been designed to allow me to live in an environment surrounded by parasitic invaders. Unfortunately, the environment has changed faster than my genetics have, leaving me with an immunological weapon that's a little to spicy.
So instead of saying my body is flawed, which in our world of perfectionism sounds like worthless, we should reexamine the label that's been applied.
I don't have Crohn's disease. I have the Crohn's gene. There, that's better. Crohn's patients, consider your invitations to the pity party revoked.

Worm-hugger

2009-09-23T22:57:00.000-05:00

I've experienced bloating all day long today that's resulted in sharp pains across my abdomen. No other noticeable symptoms, though the perpetual bloating has definitely been impossible to ignore. Next Wednesday will be day 21, when I should really begin to see symptoms, if any. I've added a countdown counter at the bottom of the page, mainly just because I wanted to add something to the page. I'm told that if I haven't seen strong symptoms by day 23, then I will likely be able to expect an easy go of it. We'll see.

I was doing some more searching on hookworms today and came across a listing for clinical trials relating to a hookworm vaccine. Further research revealed a company that is now doing testing in the U.S. and Brazil for this vaccine.
http://www.sabin.org/vaccine-development/vaccines/hookworm

As someone who has lived in West Africa, I'm familiar with the wide variety of ways one can die in the tropics, with parasites being at the top of the list. I understand the terrible mortality rates that are caused by heavy parasite infestations. However, eliminating what appears to be a destructive force doesn't mean that good will come of it. Hurricanes are destructive, yet if we discovered a way to eliminate them (which I'm sure someone is trying to do right now), drought would be the new destructive force to fill the void. Instead of getting rid of hurricanes, it is wiser to learn to live with them. In the same way, rather than eliminating hookworm infections, we should be finding ways to lessen their harmful effects, which occur in HEAVY infestations, not light ones. Or here's an idea, discover ways to create a stable economy in these impoverished countries that can then support running water and public sanitation systems, then educate the public, don't medicate them. The hookworm eradication efforts of the early 1900's across the southern United States can be claimed as a great success. But at what cost? Crohn's Disease was discovered in 1932 as doctors began seeing an increase in intestinal issues that were not related to ulcers. Simply a coincidence? Crohn's is found at much higher rates in industrialized countries (US, Europe, etc.) where parasite eradication has occurred. In parts of Africa, South America, and Asia worm infestations are often heavy, yet they see significantly less Crohn's disease. Just another coincidence?

This particular hookworm vaccine works by stimulating the immune system to prevent the hookworm from attaching to the intestines. Apparently, our current autoimmune disease crisis isn't bad enough. We now need to put overactive immune systems on steroids. If scientist don't stop doing research while wearing blinders to what's going on around them, the human race is going to become an endangered species.

I wonder if among all the discussions about saving the environment anyone has thought about saving the one inside of us!

Just a Spoon Full of Sugar?

2009-09-21T22:27:00.000-05:00

Maybe it's a placebo effect, but yesterday and today I seem to have had less shots of pain in my gut. I guess it could also be that the pain occurrences have become so normal that I've learned to ignore them. Of course the thing I'm really hoping for is that the worms are starting to work. But, knowing the life cycle of the hookworm, I know that my guys aren't supposed to be all grown up until next week sometime. I also know that my body probably isn't going to welcome my new residents with a fruit basket. So, whatever the reason is for less pain, I guess all I can do is enjoy it while it last...at least until the worms really start working to bring me a more lasting relief. My pulse rate is also down a little today compared to this past weekend. It's not down to 70, but at least it's in the low 80's now. It was low enough that I wasn't worried about keeling over while cutting the grass this evening. It's been my experience that a sense of impending doom tends to take the enjoyment of something as simple as cutting the grass. That little nugget of wisdom was free.

A Cardio Workout for the Sedentary

2009-09-20T06:52:00.000-05:00

When I checked my blood pressure and pulse on Friday my pulse rate was 99. Normally, my pulse is around 72. When I went home to eat lunch I checked it again and it was at 103. Until about 4:30 pm on Friday I continued to feel like my pulse was high, along with having the jitters. Prednisone has made me feel that way in the past, but never for a 9 hour span. Since it was the entire day, by the afternoon I had convinced myself that it wasn't a heart attack - that should have happened after a couple of hours at the most. My pulse was in the 90's yesterday morning as well. However, over the last two days it only seems to be high during the day. I'm checking and charting my blood pressure, pulse rate, weight, and temperature each day now so that I can hopefully determine if any patterns develop.
According to what I found online, an infection can also cause the body to have an increased pulse. Is my body starting to realize something else has moved in? Or am I getting the flu or a cold? I've been using hand sanitizer everytime I even think about touching a doorknob now, so I'm obsessively trying to avoid the flu. Ha! If you told me a year ago that I would be worried about getting the flu, but not the fact that a colony of worms had formed in my gut, I would have said you were crazy.

Rumbly in My Tumbly

2009-09-17T21:21:00.000-05:00

Last night wasn't too fun. I experienced a dose of the pain and discomfort that I used to have before I was diagnosed. Before eating supper I had already begun to feel a tightness in my gut. After supper it felt as if someone was slowly twisting my intestines as someone might wring out a wet towel. The pain came in waves until around 11 pm when my gut began making every sound but a car horn. As the sounds of digestion faded, my pain seemed to subside as well. Thankfully, the pain went away without me having to hug a toilet like I had in the past.
I don't think this was related to the worms. I remember now that I ate some grapes at lunch, so I probably experienced a near blockage of my small intestines. All day today my gut has been hurting. My guess would be it's a result of the roughage that moved through the day before, leaving behind an irritated intestinal wall. I had some inflammation before I began with the worms, so I think what I felt yesterday and today is "normal." Unfortunately, what I experienced yesterday and today shouldn't have happened if the Humira and Prednisone were working correctly. Worms please hurry!

A Little Game of "Volley-soccer"

2009-09-15T22:03:00.000-05:00

I was "recruited" to help with childcare tonight for the ESL (English as a Second Language) classes at church. When I last played with kids back in April while coaching soccer, there were 15 pounds less of me. So tonight was a little bit of a shock to my body. Foosball I could handle; no need to move my feet. However, moving your feet rapidly, as in running, apparently makes your heart beat faster and makes breathing seem more necessary; a fact I had forgotten since my last physically active episode over 4 months ago. Fortunately for me and not so much for them, the 3 little guys I played with all seemed to have a little bit of asthma. So when I stopped 10 minutes into running around the gym for a wheezing break, they didn't seem to notice. I'll probably feel it tomorrow as the soreness sets in, but in spite of that "man-standing-on-my-chest-while-I'm-trying-to-breath" sensation, it felt good to run, jump, and kick a ball enough to break a sweat. While my body screamed, "Stop!" my mind was able to press on, with frequent breaks of course. That means I'm ending my day without the fatigue I had yesterday!
In other news, somewhere during the course of playtime tonight an historic event in sports occurred - volley-soccer was invented by Jose, Ivan, Pedro, and I (only through the brilliance of the collective wisdom of a first, third, and fifth-grader...and me). I won't go into all of the "formal rules," but all you need to know is that it involves a volleyball, a volleyball net, basketball goals, hands, feet, and a ball that's never called "dead" until it actually stops moving. I'm definitely going to be sore tomorrow.

Not So Fast

2009-09-14T22:50:00.000-05:00

Good ol' Mr. Fatigue came knocking today, though I don't know if a vitamin deficiency or the worms brought him to my door. (Why does that sound like badly written lyrics from the 60's?) I used to think fatigue was something you experienced after you exercised. Now I know it's something that affects not just your body, but your mind as well. After exercise you can usually will yourself to do a little more. With fatigue, there is no will to begin with. Fortunately, Prednisone snapped me out of my funk after work and at least gave me the will to eat...and eat...and eat. I've gained 5 pounds this week, bringing me to 194. I just figure I'm storing up for if I start losing weight from a major Crohn's flare. So, I'm not gaining weight...I'm investing in the future. Thank goodness for those elastic bands in my pants!

Sorry for the stream of consciousness.

First hurdle cleared?

2009-09-13T21:12:00.000-05:00

I think by now the worms should have found their way into my intestines. Yet, I'm not having any "unusual" gastrointestinal issues (my usual is everyone else's unusual!). Apparently, I've been dreading this past weekend for no good reason. All that I could think about going into the weekend was the feeling of a flare-up consuming my body. For some reason, all that I can really remember of the last big flare-up was the paralyzing pain in my joints. It was as if I woke up one morning and suddenly had arthritis gripping my whole body. Thankfully, that hasn't happened again.

The next hurdle to overcome will be week 3 through week 10. During that time, if the experience of others is a good predictor, the battle for my gut will be initiated. At around Day 21, the worms will be adults, attached in my small intestines, and will be a big target for my immune system. The Prednisone and Humira I'm taking should help dampen my response, hopefully.

I just looked on the calendar to see when 10 weeks will be...the week before Thanksgiving Day. If this works, it's going to be one of the more memorable Thanksgiving Days I've ever had.

step right up for your autoimmune disease

2009-09-12T08:11:00.000-05:00

I still have a small rash where the hookworms entered my arm, accompanied by a little itching, but it's definitely decreasing. Next time I do this, I'm going to apply the worms to my forearm instead of the inside of my bicep. I live in Texas, so sweat happens. The sweat mixed with a rash and then rubbed by my arms swinging when I walk was fairly annoying the first couple of days. Something to remember in 3 years.

Yesterday afternoon I started bloating, but have no idea if that's worm-related since bloating is par for the course with Crohn's. If I'm going to have the "worm flu," I expect it will come today or tomorrow as the worms begin moving into my intestines. Everytime I cough or clear my throat, I think, "Was that them?"

Maybe it's because I'm thinking about it more, but it sure does seem as if I'm encountering more people with autoimmune diseases. This week I met with two clients and both where affected with autoimmune problems. One client had asthma so severe that the client's lung capacity is only 50% and will always have an oxygen tank in tow. The treatment for the asthma of course has caused weight gain, which in turn makes breathing more difficult. The other client has a spouse who has been hit with scleroderma in the lungs. This disease causes skin and connective tissue to tighten and harden, reducing the ability to breath. Both of these people had endured the damage done by the accepted treatment and were quickly running out of options. Desiring to provide a small sliver of hope that not all treatment options have been exhausted, I told them about my worm therapy - very hesitantly. Neither client called me a freak, but they didn't ask for more information either. A part of me wondered if it would even matter if they were interested since they would have to also convince their doctors.
Both of these clients' employment options are limited by an autoimmune disease. I wonder how many more people who are out of work or who find themselves driving an electric grocery cart because breathing is difficult, do so because current medical practices focus on treating symptoms and not the cause. How doctors "practice" medicine should be the healthcare debate we're having right now. We don't need healthcare reform, we need a healthcare revolution.

So Far, So Good

2009-09-10T17:57:00.000-05:00

I guess I should take it as a confirmation that I have indeed been infected with worms. In addition to having the itching at the entry site, I now have what looks like a mix between heat rash and poison ivy on my arm. Other than that, I don't think I've had any other side effects. Unfortunately, I find myself bracing for the worst everytime my stomach churns or some part of my body aches. I took my temperature yesterday before the infection and it read 98.2 F. Today I took it and it read 98.4 F, so no fever yet. When I've had flare-ups in the past my temp. spikes to about 101 F and subsides after a day of muscles aches. Maybe a mild fever this time of year will act as a preemptive strike to any flu bug I might get.

Worms Away!

2009-09-09T14:24:00.000-05:00

The day has finally arrived. This morning I have managed to exhibit a somewhat Stoic exterior, all the while internally quivering with the excitement of one full of hope. It was because of the distraction of those internal jitters that I decided to take the afternoon off as soon as my worms arrived. On the way home, I pondered what I was about to do to myself and just how crazy I must sound to others. But then I was reassured by considering the thousands of years that hookworms have been evolving to do exactly what I was asking them to do. Once attached to my small intestines, the very place where my Crohn's Disease is active, the worms will begin suppressing my immune response in an attempt to avoid eviction from my body. If all goes according to plan, the next 3-7 years the worms will have a food source and I will bring my immune system back into balance - an answer to the Crohn's gene.

At 1:00 pm today, I infected myself with Necator Americanus. At 1:07 pm, I began to feel an itching sensation...worms away...

Anticipation

2009-09-08T19:28:00.000-05:00

I got the call tonight letting me know my worms are being shipped today and will arrive midday tomorrow. The last few days I've started having doubts creep into my mind. What if my body reacts horribly and the worms send me into bad flare-up? With a scarred intestines do I have room for that kind of error? I don't think I'm getting any kind of cold feet, just the typical pessimism that seems so easy to latch onto from my self-pity wallow.
I must admit, that phone call tonight generated an excitement, albeit temporary, that made me forget my fears. Tomorrow night I'll be stepping onto a path that for better or worse will take me closer to finding a way to treat my Crohn's. I think it was Thomas Edison that discovered 99 ways NOT to make a light bulb. So, discovering another treatment that doesn't work just means I'm following in the steps of a smart person right? Hopefully, 99 isn't going to be the magic number.
As I go to sleep tonight, I'm going to be like a child trying to sleep on Christmas Eve - though I doubt any kid ever got excited about getting infected with worms.

The Road Not Taken

2009-09-03T22:02:00.000-05:00

I was diagnosed with Crohn's Disease on June 6, 2006. I have quickly moved through a myriad of FDA-approved drugs with only short-lived relief and long-lasting side effects. As my current treatment option begins to show signs ineffectiveness, my choices now come with greater uncertainty: clinical trials, surgery, or alternative treatments. Clinical trials sounded good at first, until I realized that I would be a guinea pig for working out all of the terrible side effects. I have had enough of those with drugs that have been deemed "safe" - thanks Prednisone! Of course, getting results from clinical trials whether positive or negative assumes I do not receive a placebo. Surgery is not much better of an option since that path will likely lead to repeated surgeries, ultimately ending without any intestines.

My biggest frustration with the way Crohn's Disease is treated is that the "cure" is almost always worse than the actual disease. My three trips on Prednisone have let me enjoy weight gain, hair loss, depression, mania, hot flashes, night sweats, acne, night terrors; all while melting my bones! Of course, before I was being treated, vomiting daily and feeling as if someone stabbed me in the abdomen was never enjoyable. But I thought that doctors are supposed to make you better - not just feel better. Whatever happened "to do no harm"?

Strangely enough, reading Mike McGrath's Book of Compost got me thinking about the unseen ecosystems that exist around us. When gardening, the use of chemical fertilizers can result in larger plants and more vegetables. However, when one uses fertilizer instead of compost it can also lead to a host of plant diseases. The tiny life forms that are found in compost help keep plant diseases at bay. Without those microbes, a part of the natural order is removed and an imbalance occurs, resulting in an excess of disease. When I read this book, which was meant to aid me in gardening, I discovered something unexpected. I began to see the entire world in which I exist as not being made up of many organisms that just happen to exist in the same environment, but instead as a world of life forms acting as balance and counter-balance to one another's existence. I had understood this to some extent with creatures that I could see: killing off all of the plants, means all of the rabbits die, which means the coyotes die. However, the realm of microorganisms never entered my mind. Suddenly, I understood that bacteria are not necessarily bad and even parasites have a role to play.

So, when I came across an article describing an experimental treatment for Crohn’s Disease that used intestinal worms, I did not think it was crazy. It just made sense. This blog is meant to record my experiences as I test a hypothesis that I have come to embrace.

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

Robert Frost