Worm Babies

Last night I had a completely adorable four year old girl ask me if I had a baby in my belly. (fat joke?) I had to think about that one for a second. I may not have a baby in my belly, but I have about 200 whipworm eggs ready to hatch, migrate to my colon, and dig in.

Wait… what?!

Listen, we all have our dirty little secrets. Mine just happen to be the parasitic worms chillin in my guts. Last Thursday (April 21st), I swallowed my first dose of human whipworm in an effort to end my 6 year battle with severe Ulcerative Colitis. A quick read of my “About” section will tell you how I was introduced to this treatment, and why I chose it. But since some of us don’t have that kinda time, let’s just jump right in, shall we?

Lemme hit you’wit some baselines.

  • I’m 24, female, and on the lower end of a “healthy” weight.
  • I’ve been through the absolute worst with his disease. When your GI looks at you and says, “I don’t want you to go home and cry or anything, but you could die at any minute,” that’s a problem. and he’s maybe not a nice man. Regardless, I was able to pull myself back from a 30lbs weight loss (down to 90lbs), what could have been heart-stopping anemia, and a grueling 15- 20x a day sprint to the bathroom by doing alternative therapies, emotional techniques, lots of prayer, and hard-core diets. Oh, and prednisone.
  • Ah yes, prednisone. The drug we love to loathe. Pred is the only thing that can calm a flare, although even that is getting increasingly less effective. I’ve been on it for more time then I’ve been off it, and my body is already starting to show the long term effects of it. Blurred vision, hair loss, achy, cracking bones, shooting bone pain… I’ll be in a wheel chair very soon if I don’t get off this crap. or blinded by cortisone induced glaucoma. and THEN how would I get to the bathroom???
  • Right now I’m in a decent place. By decent place,  mean mostly formed BM’s, 3-5x a day, little or no blood, not very much pain but the urgency is still a huge factor. Again, this is all thanks to the prednisone. I’ve been on it for about two months to stop a flare I had in Feb/March. Now that I’ve begun the worms, I’ll stay on a dose of about 15mgs for a few weeks to counter any side effects while the little guys settle in.

And since I always loved show and tell…..

“These are my worm babies.”

Arranging to get them shipped from the AIT to my house was a little tough. Huge thanks to my Dad’s friend Bob for helping me bypass government red tape.

I’m taking three doses every 4 weeks. D1= 200, D2&3= 400, which is 1,000 altogether. There has been some evience that people with severe colitis respond better to doses rather than the typical 1,000-at-once. We’ll see.

Just the thought of being “normal” again is staggering. What the heck would I even do if I knew I wasn’t leashed to the toilet? Probably not make this creepy, Im-about-to-eat-parasites face.

The thought of just shooting them down straight outta the vile as soon as I ripped the package apart was pretty tempting, but since my husband filmed this monumental event I salvaged the little bit of propperness (not a word) I have left and dumped it into a cup of room-temp water.

Tasteless, painless, clean. This beats a colonic every time.

worm babies, do your thing.

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20 responses to “Worm Babies

  1. Good luck!!! I really hope this helps you. I’m very interested about the dosing, and how you do with 200. Is this a new protocol? Is it because the 1000 at once is just too harsh on an already inflamed colon?

    I ask because at some point, I plan to add some whipworms, but my reaction to TSO was so extreme, that I’m waiting until I have some immunosuppressive under my belt first, since I’ve already gone through the hell of pred + worms provoking an abscess.

    Thanks for letting me learn from you!

    Debora

    • Thanks Debora! I think the dosing is a relatively new thing. I talked to marc at AIT and he said he has recently seems some patients respond better to a slow introduction. It’s exactly like you said, introducing 1,000 at once would not only be too harsh on an already inflamed colon, but also introducing them over a period of time gives them a better chance to “stick,” instead of my body freaking out and eliminating them initially. We’ll see how it goes! Thanks for the support 🙂

  2. Hi, Jenna! I am so hopeful for you–UC is a crazy journey, and I hope the helminths ease the bumps in the road for you. Finding your post comes at just the right time for me, as I am 3 1/2 months into my new relationship with my little fellas, and things don’t seem to be on track. This new protocol of several rounds of dosing could offer some answers. I’m due to talk to our good buddies at AIT in a few days, so we’ll see.

    Keep posting! I’ll link back to your blog from mine, just as you did to mine above. Good luck!

  3. Thanks Nancy! I’m looking forward to following your journey as time goes on since you’re a few steps ahead of me. Thanks for posting my link– all the best to you!

  4. Hi Jenna, glad to find your blog!

    My best wishes for you and your ‘worm babies’ hehe. We all come up with cute/awkward names for our helminths it seems.

    Interesting to hear that Marc at AIT is having you do doses of 200 instead of all 1,000 at once. I guess that does make sense, given that if you are already having some flaring, you might pass too many ova through. Does he eventually want you to get up to 1,500 or 2,00o TT? It is tricky, from my coversations with Marc, he thinks that AIT’s new streamlined procedure of producing the helmints means that there might be a lower atrition rate than there used to be, so it’s hard to know exactly what the right dose is now.

    Best of luck to you, and nice blog, I like your humor 🙂

  5. Hi Jenna,

    I just found your blog. I have Crohn’s and am finding that traditional meds aren’t working for me, and I’m scared of the long-term side effects anyways. I’m interested in worm therapy, and I had a question about how you got your worms shipped to you. Do you mind contacting me via email so we can discuss?

    Thanks for sharing your story, I hope all works well for you! 🙂

  6. Thanks Mike!

    Marc and I have only ever talked about getting up to 1,000 TT and then seeing where we are when I get there. I think the staggard doses is a relatively new thing, so I might be one of the guine pigs (aren’t we all) doing it this way. It will be interesting to see how it works, that’s for sure! I understand that this therapy is largly unexplored territory, but it’s so promising and that is the encouraging part. Pioneers have no roadmaps!

  7. Patricia Woodward

    Hey Jenna,
    How are you?
    I hope that the worms help you. Please let me know if it helps you.
    I am still suffering with my colitis. Everyday it is not easy to want to get up and do my daily routine. Good luck to you. I am going to try and eat some more soup. Is there any foods that you eat more often? What foods do you try and stay away from. What kind of exercise do you do?

    • Hey girl,

      I’m sorry that you’re struggling daily. I know what that’s like! I hope that you can find some relief soon… if the worms work for me maybe you can try them too 🙂 But to answer your question, I avoid all foods with gluten (wheat) and dairy (milk) in them. Check packages carefully because they are in most packaged foods. I try to stay away from processed/packaged foods as much as possible. Nuts are generally hard to digest so I only eat them on occasion. I eat a lot of veggies, I eat fruit only in the mornings, and I eat meat a few times a week. You can never go wrong with increasing your veggie intake. If you can’t digest raw veggies, steam them or make soup! Try to limit starchy foods (corn, rice, potatoes) if you are feeling particularly bad. Fish (not Tuna) and grilled chicken are good meat choices. Make sure to get organic! Overall I would highly recommend that you get an IgG food allergy test to see what your particular needs are. Keep trying things! An answer is out there 🙂

  8. Hi, I am looking forward to reading your blog. My son has eosinophilic esophagitis which is similar to IBD. He and I are going to start helminth therapy very soon. I hope to use both whipworms and hookworms.

    • Hi Helen,

      I’ve read some of the recent posts on your blog and I really hope the whipworms/hookworms will help your son a great deal. It’s so good that you have found this therapy at such a young age for him… having a child that struggles with illness makes you a great researcher doesen’t it? Sounds like you’re a wonderful mom. Good luck with the worms and I’ll be sure to keep posting!

  9. love your blog title, goes well with the other quirky ones I know of- ‘Gut Buddies’ and ‘Colon Comrades'(which is where I heard of your blog).

    I’ve had auto immune issues my entire life.. no IBDs. I’ve had plenty of friends with IBDs and they each approach it differently.. but your approach of being very upfront and confident(ie photos of you) is really cool.. hopefully it will give lives back to others.

    I’ll be getting my own wriggly friends soon.. Why? Well, I think Dr Gregory House has used them twice in six seasons.. that’s all the medical info I need! Ok, seriously, I’ve been reading a LOT about the therapy.. it’s just the next logical step.

    thanks for the blog.

    • Awesome!! Will you be getting hookworm or whip worm?? I only can’t believe in all my searching I didn’t find this therapy sooner than the writers on House 😉 It shows lots of promise and I can’t wait to get a few months into it to see how things work out. Good luck to you and your future wormies… keep me posted!

      • I’m most suited to hookworm. I have very naughty allergies, asthma, ibs and some especially cheeky nasal polyposis. I’m hoping treatment will help at least some of these.. thereby lessening prednisone use and increasing my general mojo*.

        *technical term

      • hahaha, we could all use a bit more mojo. I really hope it works for you!

  10. When AIT first got their whipworms, they did small doses over time. I know of several UC patients who did this. Maybe you can ask how their earlier responders did? Then they changed to a few larger doses, then single doses. Now they’re finding smaller doses help again.

    Does AIT keep good records of all their patients, doses, and responses? A visual graft would be ideal. It’s hard, because research will publish everything, so everyone gets the data, eventually. I wish the worm providers would share their data in such a way…

    Glad there are more people to share and streamline the process.

    • Thanks for letting me know that Debora. I am planning on talking with AIT this weekend so I will be sure to ask. I’m wondering how the prednisone dosing is supposed to go as well. Stay on a steady dose for a few months til all the worms are ingested, or wean in between dosages only to ramp back up when I take the next dose?… I’ll report back with the answers if they are to be had!

  11. Just came across your blog and am anticipating your next post! I’ve a family member that has suffered with the same disease for about 15 years. Thank you for sharing the information regarding your experiment and I hope you are feeling better. Please keep us posted.

    • Thanks Marie, I will definitely be posting as time goes on. I am about a month in and have posted two updates so far. I hope to see some results at the 8 week mark at the earliest. We’ll see! Sorry to hear about your family member…. I truly hope they can find some relief in whatever treatment they pursue.

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