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Helminth Therapy

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Ulcerative Colitis
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MarkWithIBD
Regular Member
Joined : Jun 2018
Posts : 442
Posted 11/23/2019 1:24 AM (GMT -7)
I started this today after receiving 10 hookworms (necator americanus, or "NA" for short) in the mail.

You can read everything about worm therapy at this authoritative Wiki, that was community driven:
https://helminthictherapywiki.org/wiki/index.php/Using_helminths

I'm also part of the Facebook group, which is where I talked about this a lot before I decided to do it. It took me 3 years to really take the plunge. Until now I was very hesitant. My IBD is intractable and I have run out of options.

The NA come in a tiny vial of water. They are microscopic so you can't even see them. You take the water out with a pipette, and apply it to a sterile cotton bandage. Then you put that bandage on thin skin, like the fore arm.

In 15 minutes you feel itching, as the worms enter the skin. They then migrate over 5 days to the lungs, where you cough them up and swallow them, and they migrate to the small intestine where they setup shop. In the wild, these worms infect animals through the skin.

When in the small intestine, they begin to regulate the immune system so that they can survive. Through doing so, they make auto-immune and other immune conditions go into remission. They live anywhere from 1-3 years, sometimes longer.

A lot of people have not only entered remission through this therapy, but they have recovered the ability to eat foods they thought they could never eat again, like gluten.

They suggest you start with 5-10 and I chose 10. The worms are fragile, a lot can kill them... like eating raw garlic, or the gas in whipped cream containers. Certain medications also do it.

I've got nothing to lose really. I will update as the weeks go by.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16194
Posted 11/23/2019 6:56 AM (GMT -7)
Never heard any glowing success stories from it. But who knows, you might luck out.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1572
Posted 11/23/2019 7:03 AM (GMT -7)
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!
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18319
Posted 11/23/2019 7:58 AM (GMT -7)
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.
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2400
Posted 11/23/2019 11:30 AM (GMT -7)
There was someone on this board years ago who tried it too. Can't remember how it went. Nothing terrible happened to him but I don't recall it working any miracles.
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MarkWithIBD
Regular Member
Joined : Jun 2018
Posts : 442
Posted 11/23/2019 11:13 PM (GMT -7)
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.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16194
Posted 11/24/2019 6:30 AM (GMT -7)
Not adverse side effects encountered specifically, just didn't work for a few who tried it a number of years back. You can search for Helminth and will get some hits of past attempts I bet. Pretty much everything that can possibly help has been tried over the years here, so you can usually hit others attempts that way.

Yeah who knows, you can clear them easily if you do have adverse effect or if it doesn't work. Might work *shrug*.

I can understand some folks adverse feeling on parasites though.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1572
Posted 11/24/2019 7:39 AM (GMT -7)
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
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MarkWithIBD
Regular Member
Joined : Jun 2018
Posts : 442
Posted 11/24/2019 7:42 PM (GMT -7)
My GI doc won't give me further biologics. He refuses. He will only offer me colectomy. He said past biologics failed so there's no point in trying further ones. I can't get a second opinion because no GI doctor in my city will see me while I am already under the other guy's care, since he's "the best".

So I am left with trying alternative therapies.

If it doesn't work, oh well... another thing to check off the list.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/25/2019 7:00 AM (GMT -7)
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."
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MarkWithIBD
Regular Member
Joined : Jun 2018
Posts : 442
Posted 11/25/2019 11:15 AM (GMT -7)
Because he's an idiot, that's why. He just tells me to get a colectomy or accept I'm going to die. My UC isn't even that bad right now, but it is insufferable.

The research on helminth therapy in the mainstream has come to a stand still because the FDA won't authorize further trials. The suppliers of worms have all gone underground, you can only get them by paying bitcoin.

It's a very promising, often misunderstood therapy. People will call it gross but then go take their immunosuppressants. I personally find a lot of these pharmaceuticals just as gross.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/25/2019 11:24 AM (GMT -7)
That sucks. Sounds like a really bad doctor.

Yeah, I am not thrilled to be on immunosuppressants. Find the potential side effects pretty terrifying.
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MarkWithIBD
Regular Member
Joined : Jun 2018
Posts : 442
Posted 11/25/2019 12:46 PM (GMT -7)
Prednisone is destroying my skeleton. It's the main reason I am forced to consider colectomy in the coming years, if I can't get deep remission happening. I hate these drugs with a passion and I am so disappointed that modern medicine hasn't done better in over 50 years.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/25/2019 1:38 PM (GMT -7)
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.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16194
Posted 11/25/2019 2:18 PM (GMT -7)
If you've been on pred for a year or more cumulative then getting a DEXA makes sense.

I got one DEXA after 1.5 years of cumulative prednisone usage and was diagnosed with osteopenia (the lesser cousin of osteoporosis). Just barely made osteopenia by one tenth of a point in my hip. My General Practitioner doctor said to take a daily calcium and D supplement and not worry about it. The receptionist and medical assistants gave me odd looks, being a guy in his mid 30's, showing up in a woman's xray imaging clinic, the rest of the patients where older women.

I know Keith had his hip replaced in his 20's due to prednisone.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/25/2019 2:30 PM (GMT -7)
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.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16194
Posted 11/26/2019 6:55 AM (GMT -7)
I wouldn't worry a lot about it. I do not and we sound to be in a similar boat. For your known risk, taking calcium and D supplements is sufficient. Everyone's bone density falls gradually and naturally as we age. If you keep up with the current routine over the long term then your bone density could gradually build or stay the same, while your peers have their bone density drop. So, you might even have stronger bones than you peers in subsequent decades. Especially as you like to hike and run, when you're UC is tame and in a remission and weight-bearing exercise strengthens bones and slows bone loss.

Bone-strengthening meds are only recommended for osteoporosis when there is increased risk of fractures. Those meds have side effects that aren't worth the risk, unless your density is low enough to be of larger risk.

In Keith's case, bone loss from prednisone was not the only cause. If I remember correctly, blood flow was cut to a section of his hip bone. With no blood flow the marrow and bone tissue dies.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/26/2019 7:14 AM (GMT -7)
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!
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MarkWithIBD
Regular Member
Joined : Jun 2018
Posts : 442
Posted 12/9/2019 12:24 PM (GMT -7)
Just wanted to give an update.

On day 4 of this therapy, my bowels started to relapse. I had urgency and frequency that was like 2 months ago when my flare was really bad. The HT group said it's normal to have a bit of a relapse before you start getting better, but for me it wasn't worth it. I wasn't willing to go through fulminant flare hell again with the hope that maybe the worms make me better down the road. I ended up aborting HT by taking mebendazole, and my bowels improved immediately.

It's now about 2 weeks later, and my UC is severely relapsing. It's possible that the worms weren't all killed, or something else is happening. It's unusual for me to go from the recovery phase of a flare back into the acute phase, and this feels like an infection. The only obvious change is the worms.

My doctor has given me a second round of mebendazole, but it does not seem to be creating improvement like it did last time. I am frightened. I have never had a flare go in reverse like this, and so fast.

The HT group says I probably started with too many worms. Maybe starting with 5 would've been better.

I can't recommend HT for the simple reason that it's too unpredictable. In most people the worms are guaranteed to cause a relapse at some point before you get better, but whether this happens at day 4, day 21, or some other time is unclear. It's also unclear how severe the relapse will be. It's also unclear whether the worms will grant lasting improvement. Some people permanently worsen from the worms, even after months of waiting.

It was worth a try I guess, but I may be paying the price now, IF this is somehow related. Not sure yet. Like I said, I can't recommend HT because it's too chaotic. If only there were more research done that could provide better guidelines, but HT is community driven and the only data available is from people's experience reports.

Anyway, not for me. Now I have to figure out how to manage what's happening to me sad
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iPoop
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Joined : Aug 2012
Posts : 16194
Posted 12/9/2019 12:51 PM (GMT -7)
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).
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Sara14
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Joined : Mar 2007
Posts : 6235
Posted 12/9/2019 1:19 PM (GMT -7)
That's scary. Sorry to hear your symptoms are back. I hope the second course of antibiotics wipes them out. I had infectious colitis for months that would respond to antibiotics and get worse again after I finished the course. That's not something I would ever want to go through again.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 922
Posted 12/9/2019 2:10 PM (GMT -7)
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.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 12/9/2019 2:49 PM (GMT -7)

poopydoop said...
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.

Thank you, poopydoop (love saying that user name...just makes me smile). I'll keep that in mind if it comes to that.
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MarkWithIBD
Regular Member
Joined : Jun 2018
Posts : 442
Posted 12/9/2019 4:41 PM (GMT -7)
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.
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CCinPA
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Joined : Dec 2014
Posts : 1572
Posted 12/9/2019 4:43 PM (GMT -7)
Sorry to hear this, Mark. I thought you were nuts to try it but I was hoping for the best for you.

I agree with both ipoop& poopydoop -- either consider surgery or give xeljanz a try.

Whatever you decide, I hope you find some relief. You have been having a really rough time.
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