Down the Hatch: Human Whipworm

hi everyone,

now into week 10 for the first batch and second batch is at week 5, awaiting delivery of a third dose this week.

as before, no side effects to report at all, its all very undramatic.

On a positive side, things continue to show small improvements, still having to visit the bathroom at 6+ times a day, but the great thing, the amazing thing, is that it is not urgent. Went to the theme park the other day and the gents only had one cubicle which was occupied when i got there, in the past, i would have been doing mental calculations, as to whether to wait or to run to the next toilets half a mile away. i waited 5 mins for a cubicle, no problem, this is very unusual!
And i dont have to get up on a night either these days, and no blood at the moment, and less mucus.

This small improvement has allowed me to put on 4.5 pounds in weight, from 9st 4 to 9st 9.5, and people have said that i look better.
And this is all without any other meds at all. A doubter might argue that this is just a natural ebb and flow of a relapsing remitting disease, but my colitis does not go into remission without 50 mgs of pred these days, and i have not seen true steriod free remission for 10 years now!

so i think it might just be starting to work for me.... will keep you all updated.

Hoping you can be a pathfinder, bowie- great to hear the good news. I am not far behind. As you know, I may have had some side effects in terms of D and mini-flaring from mine- hard to be sure. So far no benefit (and in theory it should be months before one sees a benefit), but I am 2 or 3 weeks behind you since our initial doses.  Any chance you can get a blood test any time soon to measure a few parameters such as CRP, EOS, etc?  I may do one later this week.

You are in the UK now? Here in the US there are ways to get blood tests and the results without any involvement of a doctor. My GP is happy to write me rx's for blood tests and he knows about my whipworms, but I still have to pull teeth sometimes to get the results so I just order them directly online. I had no abnormal indications whatsoever during my (transient) initial suspected whipworm mini-flare that started 2 weeks after swallowing the first cohort, but my prednisone could be masking elevated CRP. You have access to high powered microscopes, centifuges etc? It is not an easy thing to see worm eggs. When I was trying TSO and hookworms, several respected labs gave me false negatives and never spotted so much as a single egg. They did see my TSO eggs in colonoscopy biopsies though and initially freaked of course.

hi all,

herewith news of my adventures with whipworm for ulcerative colitis. I have had 3 doses so far, first does of 50 is approaching 3 months, second dose of 150 is around 2 months now, and a third dose at end of third week on thursday.
just to say i am no no other medication at the moment, my GI want me to start on 6-MP but have put that on hold to give worms a free run at my immune system.

the story so far was that the first 2 doses showed few side effects, nothing that could really be distinguished from the variation in my colitis. And I had seen a few glimpses of positive change. I had manageed to out 5 pounds of weight on, without any effort, usually to put any weight on i need to be in the gym and eating protein shakes etc, but i was above my sick weight of 9 stone 4 pounds for the first time in years. Colitis symptoms were still very bad, but noticeable that i was passing a bit less blood than i had been.

This was before the third dose of 500. Side effects on this larger dose were more noticeable. 10 days in I got bad diarrhoea for a week, and this coupled with chronic tiredness.
What I am about to say might seem very strange to you, but both the D and the tiredness was what i would call "clean". In that if I am having a really bad time with my colitis, with the same kind of diarrhoea and also feeling tired, i would be feeling terrible with it, headaches and generally feeling sick,. My experience with this week of side-effects has been that i have not resorted to headache tablets, pain killers or indeed any medication and have not been feeling particularly sick, the tiredness just felt like i had been running for miles and was knackered at the end of the day. This is in contrast to my experience with hookworm, which made me feel very unwell, and forever reaching for pills to help.

Anyway, after a week of whipworm induced D, my guts are getting back towards "normal service", which is still bad D but just less water. So i think that i have passed the worst of the 500 whipworm. I am eating normally again. The week of D has cost me couple of pounds in weight, but not all of the gains i made over the last couple of months, so i hope I can continue to put a few more pounds on over the next few weeks.

so just waiting now for any sign of immune-modulation by the latest batches. am strangely patient these days. when i tried hookworm last year, i was counting the days and weeks, waiting, watching for any benefit, while now I have at times what i would call a zen like calmness over the whole experiment, maybe the worms are doing this, haha, or maybe just feels right this time, certainly I am in better shape now than in june before i started this experiment.

will keep you posted,

Hey everyone,

Super busy and haven't had a chance to update.

First dose of whipworms took effect June-August and I was feeling pretty good.  By August, I was down to one trip to the toilet, no blood, little urgency.  I took another dose in September, and it's probably too soon to tell exactly what the response will be, but in addition to one trip to the toilet and no blood, the urgency is gone. 

My GP and GI are a little amazed.  The GP is happy to credit the whipworms and has been digging through the medical research.  The GI is more circumspect and talks about "spontaneous remission."  Yeah, whatever.

I still take at least two doses of sulfasalazine every day and I take a third dose if I remember.

Side effects have been minimal, and gassiness is probably the most constant one.  Some malaise here and there.  My energy hasn't been the same since I was sick, but I was flaring for almost three years, so I really can't complain.

Good luck, everyone.

Thank you for keeping us posted on your progress, Pioneers!

UC symptoms are pretty much under control:  some gas, some mucus, occasional abdominal cramping, loose stools about half the week (but only once a day, mostly).  It's a huge difference from my last flare.

My bloodwork has been wonky for about a year or so, mainly low platelets, but docs attribute that to UC.  The joint pain and fatigue (exhaustion, really) have gotten worse and worse, though. 

I've been talking with my GP, GI, and a surgeon lately about surgery.  All think it's probably a good idea.  I suppose the worms will die by end of summer 2011.  Depending on the severity of the flare that results, I will almost certain pursue surgery rather than continue to attempt to manage the UC.

I'm pretty content with the decision to have surgery, and I'm not convinced that a cure is anywhere on the horizon. 

There's a lot of evidence that people who have surgery are much happier and healthier than people who can't control their UC.  My current GI and surgeon see a lot of patients and, if they have to predict the course of my disease, they're pretty sure I'll have surgery at some point.  Whether I do it in the short term and enjoy the 40+ years ahead of me or do in the long term, when I'm older and have dealt with UC for decades, is up to me.

Speaking of tobacco use, there was a pretty interesting study out of France recently that concluded that letting UC patients continue to smoke was overall better than having them stop.