Crohn's Disease Forum » Your Story » The treatment leads to the problem???

07-11-2015, 07:10 PM   #1
zultron's Avatar
Join Date: Jul 2015
Location: Austin, Texas
The treatment leads to the problem???

Folks here know that helminthic therapy is often used to treat IBD. After years of researching and months of experimenting with helminthic therapy, it suddenly dawns upon me: I may have IBD. Sounds backwards, right? Most folks know the condition first, and then research and experiment to find a therapy. Here's how this happened to me, perhaps fittingly in reverse-chronological order.

For several months now I've been incubating Hymenolepis diminuta cysticerci (HDC), the larvae of the rat tapeworm, in my amateur laboratory, about 6-8 batches at this point. These are the same organism sold by a company in the UK. I had a great experience buying a few batches from them, but I'm starting a new business (AKA unemployed) and my wife's a student, and they're cheap, but the expedited shipping to the US was too much strain on our finances, even though $100 per month is quite inexpensive compared to many therapies. Instead I spent a whole lot more money and time figuring out how to incubate them myself (sounds dumb, but ongoing costs to produce enough HDC to infect the whole neighborhood are now under $10/month, so the investment is about to pay off).

HDC have almost erased the seasonal allergies that bothered me since childhood. Here in Austin, there are usually two periods each year, one or two weeks each, where my allergies get so bad that no antihistamines help. Histamine-filled mucus drains from my sinuses into my throat where they burn the tissues, and I wake up with a sore throat and tonsil on the side I slept. Within a few days, the conditions are perfect for a bacteria party, and this develops into allergies *and* bronchitis. I could never tell whether I had allergies or a cold until recently. This year, with all the insane rain in Austin, the winter period lasted for four months instead of two weeks, and I was crippled, so decided to try HDC. Within a few days the allergies were gone, and for the first time I was able to distinguish the allergy symptoms from the bronchitis symptoms. What a revelation! Since then, allergies have not returned except once when I didn't re-dose on schedule.

I'd actually taken a casual interest in and had been researching helminthic therapy, esp. hookworm, for a few years. I think the interest started from the possibility of treating the allergies, but it seemed possible it could also help with my arthritis (8 years) and seborrheic dermatitis (15 years), both chronic immune problems that evaded treatment. If hookworm could be shared legally in the US, I'd have tried it long ago, and still hope to someday.

About 20 years ago, I had a motorcycle wreck and was extremely lucky to have just a fractured ankle and road rash (like 3rd-degree burn) over much of my arms and hands. Soon after, I went to Taiwan for a year to study Chinese. In Taiwan, I developed frequent diarrhea, abdominal pain, bloating, etc. For both the road rash in the US and the diarrhea in Taiwan I took a whole bunch of antibiotics. I believe in these theories about the biome and the importance of gut bacteria, and I wonder if the diarrhea onset and use of antibiotics were purely coincidental. In any case, the GI symptoms have continued on and off ever since. At one point a friend scared me into seeing a doctor (parasitic snails from Taiwan!), and the first round of tests revealed nothing but an obstruction. She said the blockage might be solved with laxatives, and if a follow-up colonoscopy found nothing, the diagnosis would be IBS. I never went back.

Back to the present. My arthritis has been quite bearable for a few years, but is flaring up again, making it hard to sleep. It was once bad enough to make it hard to sit; I'm tall, and the weight of my thighs hurt my knees on a normal height chair. Most of the time, the elbow, wrist and knuckle pain makes it hard to code (my job) for long periods.

A couple of nights ago, the joint pain flare-ups finally prompted research. I spent a few hours ruling out dozens of conditions that cause joint pain, including RA and other immune-related arthritis. Finally I found a Crohny's post describing her joint pain, and the patterns of migration between joints, flare-ups, etc. sure sounded familiar. After this breakthrough, the idea of IBD starting making more and more sense.

It seems like I should have thought of this earlier. For as long as I've known about hookworm, I've also known of IBD, since the former is used to treat the latter. It just seemed impossible that my symptoms could be IBD or Crohn's, since all the stories I had read were about the most miserable people with the most painful of symptoms. My GI symptoms are annoying and painful when they flare up, but not enough to prevent me from leading a normal life.

But the joint pain stories really rang a bell, so what the heck, I read the Wikipedia entries on IBD, Crohn's and UC. It looks like there *is* such a thing as mild cases of Crohn's, and being undiagnosed for 20 years actually fits a pattern. Many symptoms fit my case, obviously the many GI problems (including the obstruction the doctor found), and the arthritis. It surprised me that my fatigue and depression could also be symptoms. Wow, could it be that many or all of these symptoms have a common cause?

I pretty much avoid seeing doctors at all costs, but getting a real diagnosis might actually be a compelling enough reason. The HDC seem to have lessened some of the GI symptoms, but not the arthritis (or dermatitis), and so my pursuit of hookworm hasn't ended. If IBD is for real, I'll actually intensify that pursuit as well as an additional interest in FMTs.

Whatever happens after this, I feel extremely fortunate that I can live with my symptoms (and sure hope they don't worsen). I feel awfully sad for those folks whose more serious cases have had such crippling impact on their life quality, and really, really hope that some of the new things we're discovering about our biome will lead to a real, permanent, medicine-free cure for this and other diseases.

Last edited by Jennifer; 07-12-2015 at 05:59 PM. Reason: Name of company removed

Crohn's Disease Forum » Your Story » The treatment leads to the problem???
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