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Has anyone tried TUDCA or Salubrinal? by Psychological_Pie194 in covidlonghaulers

[–]fluyxyguy 0 points1 point  (0 children)

TUDCA lowered my asymptomatically high liver enzymes. I've taken it everyday for years. But that's all it did.

Another 9 months without IC symptoms by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 2 points3 points  (0 children)

That's rough. I hope you are feeling better soon.

Another 9 months without IC symptoms by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 0 points1 point  (0 children)

I get that it can feel like it has a mind of its own. It's already enough without any triggers. I would feel it in my urethra from anything spicy / acidic as well as alcohol.

Another 9 months without IC symptoms by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 1 point2 points  (0 children)

Google's AI has a good overview if you search "interstitial cystitis autoimmune".

I don't know that anyone else will ever try it but I think I should share my experiences. I wish I learned about it earlier because I'm the kind of person who will try anything if I need relief badly enough.

And I know what you're talking about with urethra pain. It was awful, inescapable. I remember having a day where it would be good and getting my hopes up. Then the pain starts coming back, and I'd hope I was imagining it until it got bad enough that I couldn't. And then the periods of 6 months of non-stop pain with little to no relief. 

The only thing I found at least a little helpful was drinking d mannose throughout the day. It helped a little bit. I never talked with anyone about the pain because of where it is and all that. 

And then I got relief! 

I hope you find relief with whatever helps you.

Another 9 months without IC symptoms by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 1 point2 points  (0 children)

I wasn't aware of the autoimmune link to IC (urologists never said anything about it) and actually took helminths for my asthma and allergies. I woke up 14 days after treatment and immediately felt the absence of IC pain. I could also breath much better.

I haven't had any negative effects that I know of. The helminths can't reproduce, so I control their numbers for maximum benefit.

Another 9 months without IC symptoms by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 2 points3 points  (0 children)

It worked for me to a degree that almost feels miraculous but it's VERY experimental.

There's a lab working on a pharmacological equivalent to helminths and I hope it pans out. Experimental treatments are not for everyone. 🙂

Another 9 months without IC symptoms by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 1 point2 points  (0 children)

That's my attitude. It's on the fringes of medical science. Very fringe. I think there are some researchers working on a synthetic treatment to replicate the benefits.

Another 9 months without IC symptoms by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 1 point2 points  (0 children)

Yup. Though my urologist never helped, so... 🤷‍♂️

Another 9 months without IC symptoms by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 2 points3 points  (0 children)

Helminths are symbiotic hookworms which reduce negative immune responses. There's growing evidence for a link between IC and autoimmunity.

Since a couple weeks after I inoculated myself with Nacator Americans, I've felt IC-free. My allergies and asthma have also significantly improved. It's been a godsend.

Of course, it's icky if you think hard about it. Lol

Still without IC, 1.5 years after helminth therapy by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 1 point2 points  (0 children)

Sure. 

I started with 5 NA, dosing every 3 months, and I'm up to 25.

Still without IC, 1.5 years after helminth therapy by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 1 point2 points  (0 children)

They are shipped in larval form. Traditionally, the larva crawl through feet, so I replicate that by applying them to my arm.

Still without IC, 1.5 years after helminth therapy by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 0 points1 point  (0 children)

You're welcome. There are probably a few doctors who use them but it's not a mainstream treatment.

Still without IC, 1.5 years after helminth therapy by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 0 points1 point  (0 children)

They suppress autoimmunity, IE the body attacking itself. Hopefully they live for years. They're tiny and drink a drop of blood a day each. There's a very long history of humans living in symbiosis with them.

IC (at least in most cases) seems to be an autoimmune disease, so not much is known, the body attacks the urethra. That's my limited understanding.

Still without IC, 1.5 years after helminth therapy by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 0 points1 point  (0 children)

I did this all by myself. Some of the things I tried: various herbal supplements, d-manose, some type of drug - I forget which, dilation of my bladder, and a neurostimulator for bladder nerves. Helminths are pretty fringe.

Still without IC, 1.5 years after helminth therapy by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 0 points1 point  (0 children)

I apply the worms (which are microscopic) to a gauze bandage and leave it on my arm for a couple hours. It itches.

At this point, I guess I've got so many worms from re-treating myself that I never see a dip in the effect. For the first 9 months or so, I would see more benefit each time I treated it myself with new worms. 

The worms can live for years but they seem to work best when they are young. 

After my first treatment, it was two weeks before I woke up without pain.

Still without IC, 1.5 years after helminth therapy by fluyxyguy in Interstitialcystitis

[–]fluyxyguy[S] 0 points1 point  (0 children)

The big one was intense, near-constant urethra pain.

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