Worsening

It is now 8 months since my last infection with 10 hookworm larvae, and I am steadily going downhill.  Now pain is a constant, I saw blood yesterday for the first time, I’m going to the bathroom a minimum of 5 X a day, mostly loose or diarrhea, and I’m nauseous on and off, have very little appetite, and have now lost 10 pounds.  Can I just say I hate this disease?

I did another egg count, and had plenty of eggs, in fact, the same that I’ve had since about 6 weeks from the last dose, so my regression is not due to a drop in egg production, or worms dying.   Perhaps some male worms died, but the females are laying as strong as ever, so I don’t know what the hell is going on, except the theory that Crohn’s needs more frequent stimulation, and that the infection itself, or the new worms are part of the necessary immune stimulus.

I am bolstered by the eggs in my stool, however.  Whatever it means.

I know the worms help, and I’m hoping another dose of 10 or so will get me back to a good place for a while.

When I first started this blog, my intention was to log my journey with hookworms, and I apologize for how up and down the whole thing has been, but that’s the way it’s gone.  I haven’t ever reached remission in terms of symptoms, but I’ve reached pain free living (which is why it’s been so hard to have pain again for the last few months!), and certain things have gotten incredibly better, while other things have gotten worse.

Anyway, I still encourage everyone to try this, but the expectation that you will only have to infect once every 3-5 years is probably unrealistic.  I’ve been in touch with at least 5 Crohn’s patients who maybe get to the one year mark, then have to reinfect.  Human whipworms seem successful for the very few UC’ers who’ve responded on the yahoo forum, but the data is scant.  The research is overwhelming, but the human trials haven’t yet proven anything, and nor have I.

I’m back on the Specific Carbohydrate Diet, with lots of probiotics and I’m just trying to hang in there until I find a safe new worm source.

I’m performing as a bassist in a band on Saturday, and it really sucks how sick I feel.  A pad in my underwear to catch the drip, some Immodium, but God it sucks trying to live your life when you are ill, and though I have 22 years of experience, it never gets easier.

  1. A’s avatar

    Sorry to hear about your worsening. You mentioned you didn’t reach remission. Which symptoms didn’t improve/worsened? Was it the mucus and loose stools?

    Did the worms at least prevent the IC valve stricture from progressing?

  2. Matt’s avatar

    Hi there,

    I’ve just stumbled across your blog. First of all, don’t ever be tempted to take this blog down. You will no doubt encounter debate leading you into negative temptation… but stay strong, and keep it up. The information that you are providing is very valuable and will live on for years to come.

    I’m a Crohn’s patient, 29 years old from the UK and have been diagnosed since I was 17 years old. I’ve had mixed results, remission, flare ups, the works. Currently it looks like I’m starting to flare up again, with a recent colonoscopy showing signs of further inflamation.

    I’ve not tried any ‘worm’ or similar parasite treatment… but I’m interested. I’m going to start a little research and see how I get on.

    Keep up the good work mate, and I hope you recover asap.

    Take care, Matt

  3. I’s avatar

    A,

    I never got to consistently solid stools. I’ve still had mucus between bowel movements as well. Those have been the main symptoms that haven’t gotten better. I haven’t done a follow up colonoscopy since I’ve gotten worms, so I can’t be certain, but the pain in the IC valve completely went away until recently, and my blood markers of inflammation have been normal while I’ve hosted the worms, until recently. So I conclude that yes, they’ve stopped progression of worsening, which is why I’m so frustrated in waiting through my incubation failures, since every week is bringing more inflammation which can contribute to further scarring.

    What has gotten worse is magnesium deficiency, hormonal imbalance which has led to horrible PMS with monthly anxiety, insomnia, night sweats, depression. The magnesium deficiency has caused twitching, muscle cramps, numb hands and lips, and probably is a big contributor to the PMS symptoms. Can’t necessarily blame the worms, but I have seen a few references here and there with TSO patients and the occasional hookworm patient with increased mag loss, so whether or not it’s the worms is still in question. I’ve never had these symptoms before, in my 22 year history with Crohn’s, so it’s a little suspicious, but they’re only supposed to affect iron and protein in malnourished individuals, so I can’t be certain. Supplementation isn’t helping, neither did intermuscular shots, so it’s just a daily putting up with symptoms, and the fear of never getting better that I’ve been dealing with in tandem to the improvement with the Crohn’s.

  4. I’s avatar

    Thanks, Matt

    I’m keeping it up, the community that’s building around this is so valuable, and whatever I can do to help other Crohn’s patients from suffering like I have is worth it. My posts on articles of possible co-infection, the speculative comments, and my ups and downs are damaging to the commercial companies, which may lead to sick people not taking the plunge and trying worms to get well. I’ve always believed people can read articles and discussions and form their own opinions, and if someone is scared away by a comment on this blog, perhaps they weren’t prepared to make the commitment to try this therapy anyway? I encourage anyone with Crohn’s to try hookworms, they’ve got a pretty high success rate, but we don’t know the right dose, frequency of dose, or who will respond negatively the first few months, etc. Unfortunately, that information is proprietary to the commercial companies, so all the people who’ve gone before remain mysteries, unless you’re one of the very few to publicly blog your symptoms and success (or lack of), which I strongly encourage.

  5. Linda Hagar’s avatar

    Thank you for being honest about the ups and downs of trying hookworms. I don’t think it would help anyone to hide your struggles and to make hookworms seem like a miracle cure. We don’t need to be protected from the truth any more than we need the FDA protecting us from trying to help ourselves!!!

  6. Reid Kimball’s avatar

    Yes, please continue this blog. I have Crohn’s, manage it with the Specific Carbohydrate Diet, but if I eat a meal that upsets me, I get a flare-up easily. Been considering hookworm therapy for added security.

    I hope you figure this thing out. Keep a journal if you aren’t so you can review your notes and spot patterns if they exist.

  7. Reid Kimball’s avatar

    Related to your IC valve strictures, have you tried glutamine? Yeah, annoying to think about trying another treatment, but I swear it helped heal my intestines. Not sure the hookworms can do that, so maybe the two can work together?

    Here’s a post I wrote about my own experience with glutamine.
    http://blog.rbkdesign.com/2010/05/strawberries-bowel-obstructions-and-glutamine/

    I don’t know how long someone else would need to use it. My doctor told me several years, but turned out within 6 months I saw results. I plan on using it for several years however.

  8. MG’s avatar

    did you ever get tested for Vitamin D? Are you in the 50-70ng/ml range or less? If less, you should really supplement.

  9. I’s avatar

    Just got another D test; it was 55, so I’m in range. Good thing, but it’s not helping with the anxiety or inflammation, so I’m now eliminating all grains and sugars, gotten tested for celiac, and hopefully will add more worms soon. I think it was a big mistake going off my diet (SCD) and perhaps the consumption of things I wasn’t digesting has led to adrenal fatigue which would explain the hormonal imbalances, magnesium malasorption, as well as the loose stools/gas;mucus. Hopefully a multi-pronged approach will be more successful.

  10. I’s avatar

    Reid, what dose of glutamine do you take? I found some in the powdered form that is pure glutamine. I’m reading anywhere from 3 g on up?

    Is SCD still keeping you in remission? How long did it take to reverse symptoms?

  11. Mike’s avatar

    God be with you..
    I’ve been dealing with this for exactly 20 years.
    Stay strong, we all have our days…
    cheers. Mike.
    ps: guys, try VSL3..i saw some improvements.

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