Helminth Therapy

Never heard any glowing success stories from it. But who knows, you might luck out.

I remember many years ago a few crohns members tried this route. Nothing much came of it. Back then it was not FDA approved, not sure about now.

Remembering some of the the potential side effects for myself it would be a solid pass.

NSSG and iPoop, what were some of the side effects you heard about that turned you off?

CCinPA said...
wow! I would have surgery before I would infect myself with hookworms! My dog had them and had horrible bloody diarrhea from the worms. They literally were sucking the life from him ... he had no energy at all. They are difficult to get rid of because the live for a long time outside of a body and he kept getting re-infected. Eventually the meds worked and he was able to get rid of them, but I will never forget the hell he went through. I was terrified I would catch them but never did thankfully. (This was about 30+ years ago ... long before I ever had UC)

Have you tried FMT? That's something I would try. Worms? Never!!!

Good luck!

This is a lot of fear mongering. Did you read the wiki link posted?

They don't suck the life from you because the number you use remains the same. If you use 10 you will only have 10. In animals they reproduce to high numbers.

Your claim doesn't make much sense. De-worming pills are super effective and kill most worms within 24 hours of taking them. It's actually the opposite, they are quite fragile. Even eating the wrong foods can kill them.

I didn't read your link. I just know my experience with my dog and it was horrible. It took many months and multiple treatments to finally get rid of them. I wasn't fear mongering. I hope you do ok and that it doesn't affect you even a fraction of what it did to my dog. Hopefully it acts differently in humans

You said before that there were some medical options you hadn't tried -- Xeljanz & Stelera. I assume you decided against them since you are doing something like this. Best wishes

Why wouldn't he let you try xeljanz? That is a completely different mechanism of action than Remicade and Humira.

The helminth therapy sounds potentially promising. Found this review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4374592/

"Conclusions:
Without doubt there is overwhelming evidence from animal studies that helminth infections exert strong immunomodulatory activity and are able to inhibit, alter and modify other ongoing immune responses. In addition, human crossectional studies have established that many chronic helminth infections in endemic communities are associated with the induction of regulatory and anti-inflammatory networks which may act to inhibit inflammatory responses such as autoimmune and allergic reactions. However, to translate this into clinical helminth therapy forms have proved less successful in the few published clinical trials conducted so far. It may be that for worms to be successful in controlling inflammation we need to be exposed to them before the onset of the inflammatory condition or even that we need to be exposed to them at a young age to allow our immune system to co-develop together with them. In recent years substantial interest has been generated in the field of inflammation and autoimmunity regarding the impact of the composition of the intestinal microbiota and its role in shaping our immune responses both in early life and later [44], including the importance of diet in maintaining a healthy gut community [45] but it remains to be established whether worms form a vital part of this “healthy intestinal community”. Regardless, some promising data has been achieved using human helminth therapy but many questions remains to be investigated, such as the appropriateness of the species of helminths used, whether infections should be systemic or localized, whether the dose should be light or heavy, of acute or chronic duration, and the role of host genetics. In addition, the use of helminth-derived anti-inflammatory molecules is yet to be tested on a clinical scale but may be offering a less controversial, and perhaps more palatable, promising new avenue of anti-inflammatory drug development."

That sucks. Sounds like a really bad doctor.

Yeah, I am not thrilled to be on immunosuppressants. Find the potential side effects pretty terrifying.

I'm worried it's destroying my bones, too. I have another DEXA scan in February. I have foot pain that recently came on after a ONE-mile walk, and I'm scared it's a stress fracture. I'm seeing my sports medicine doctor for that in 2 weeks. Hopefully it's something else, like tendonitis or something, but the symptoms I've researched online point towards stress fracture. From walking one mile. That would be insane.

Lol!

Yeah, I had a scan done 2 years ago. I also had one in 2007 before ever being on pred (I got it done for free because I was covering a story for the newspaper on a mobile screening van), and it showed mild osteopenia even back then, but they told me that could actually just be normal for me since I was naturally very thin back then. The scan two years ago showed the same, I think. They said I could take some bone-forming drug like Fosamax or something if I wanted to but that it wasn't necessary. I guess insurance only covers the scans once every two years. I've definitely been on more than a year of cumulative pred...probably at least 2 years and counting! Keith's story really freaked me out.

I was also smoking for large chunks of 2018-2019, which was incredibly stupid. :/ Done with that now, however.

Oh, I am taking calcium and Vit. D now and also trying to get more of it in my diet.

Yeah, I really don't want to take osteoporosis meds. Ok, didn't know that about Keith -- thanks. I hope my foot pain is nothing major, so I can get back to exercising soon to try to combat the pred effects!

Sorry to hear it did not work out. So many unknowns, hard to say. Seems reasonable to run a second course of mebendazole to verify that it's truly cleared.

What's plan B? I honestly think you are just delaying the inevitable, getting a colorectal surgery. I know you have some fears about that, and everyone does. However, you're just grasping at straws with some of these alternatives and maybe even doing more harm than good. You've tried everything under the sun, and gotten no results. The studies show great results with surgery. Most wake up and feel fantastic now that the cause of their pain is removed, and wish they had done it a lot sooner (rather than suffered for so long).

Give xeljanz a try, if you can. It's NOT a biologic and your doctor is an idiot if he thinks it is. Xeljanz often works within days. Especially, it has a high success rate in people who did not respond to other drugs.
I think you have me on ignore so might not see this.

Sara - i take a drug called prolia for osteoporosis. It's a subcutaneous injection every 6 months. They wouldn't put me on fosamax because it might not be safe during pregnancy (it can cross the placenta). Prolia has some horror stories too (rebound fractures on stopping) but the chances are small and so far i didn't experience any side effects.

iPoop, I just had remission for 2 years with no meds, so I'm not ready to consider colectomy. I know it's possible to live freely from this disease with natural means and that's what I'm aiming for. I don't want a colectomy, but thanks for suggesting it.

poopydoop, you're not on my ignore? Anyway, I have been curious about Xeljanz, but I don't know how I feel about being dependent on another drug, especially one that does what it does. I don't feel that long term immune suppression is a good thing.

I believe I will eventually find the reason for my UC and beat it, I just have to be patient.