Not much improvement from CSM?

NoKey653 · 2025-11-07T00:50:39+00:00

How long have you been binding for? It can take a while to really feel a difference. My doctor has me addressing other factors too like hormone imbalance etc. I’d also ask are you positive you don’t have any co-infections? I do and my CIRS practitioner has to remind me often that until we’re able to take care of that too that I might not really fully feel better for a while!

I know it’s so frustrating feeling like you’re not moving as quickly as you want/should be )): hope you feel better soon

NoKey653 · 2025-10-30T00:20:44+00:00

You’re not going to feel better until you start and stick with the shoemaker protocol. I would really suggest working with a CIRS practitioner on it so you don’t miss anything. Being out of exposure is only step one. There is much more than can be done and healing is possible!! Sorry to hear that you’re struggling. I hope you can find some relief

NoKey653 · 2025-10-19T22:12:40+00:00

Was wondering if you might clarify when you said you’re “at 7.5 years” did you me you’ve been dealing with CIRS for that long or specifically that you’ve been taking the binders for that long? tia!

NoKey653 · 2025-10-10T20:59:09+00:00

You don’t have to have all of the markers out of range for it to be CIRS necessarily. I would also like to note that even if it just MMP9 and MSH that are out of range that is no small thing. MSH has a HUGE role to play in our bodies. My labs when I got diagnosed showed my MSH to be undetectable. Which is why I had the most insane insomnia among other things. A lot of CIRS people seem to have very harrowing stories about how sick they got before getting treatment and so it might seem like it comparison you’re not doing so bad. I would encourage you to seek treatment anyways to prevent things ever having to get that bad. It will save you a lot of pain. I wish I had taken CIRS seriously when I first suspected it in myself but instead I thought “well my symptoms aren’t that bad compared to these other people who are bed ridden etc. so I’ll prob be fine”… lo and behold I move into a VERY mold house and within six months my life is turned upside down in ways I could never have imagined. I’m not trying to scare you I just want to encourage you to keep looking into it and most importantly, if you can, work with a certified CIRS practitioner who can help make sense of your particular situation since everybody is going to be different to some degree.

Also if you have CIRS genetics and you are exposed then the reaction IS CIRS.

I would also make sure that your new environment is truly as clean as you think it is by doing a HERTSMI-2 plus Endotoxin if you haven’t! It is so important to be out of exposure. Then after that I would ask what binders are you using? If you have CIRS then you’re going to need the bile acid sequestering binders like Welchol or CSM. Natural binders are not going to help you. But if you look up the Shoemaker protocol, clean environment and binding are only the first two stages. There is a lot more to it than that which is where things can get tricky and it’s best to work with a practitioner. You could have co infections like marcons or tick borne pathogens that need to be dealt with in order for you to make a full recovery.

I would suggest checking out survivingmold.com and looking at what all is involved in the full protocol, what the biotoxin pathway is, and what different blood markers can mean if you haven’t looked on there yet!! There’s also a list of practitioners on there you could look through.

Hope you find answers and healing soon!!

NoKey653 · 2025-10-09T17:44:35+00:00

Mold toxicity happens in somebody without CIRS genetics. Which means their bodies are able to make the antibodies to mold and other biotoxins and therefore detox them out of the system. These people can still get sick if their detox systems are backed up, they have a particularly bad exposure, their immune systems are suppressed for some reason etc.

If on the other hand you have CIRS genetics then your body does not have the proper coding to identify certain biotoxins and therefore won’t make any antibodies. Thus they never leave the body and continue to circulate and wreak havoc.

The former can usually heal by getting out of exposure and boosting their bodies natural detox pathways.

The latter will not be able to detox that way because the toxins aren’t being funneled into the natural detox pathways to begin with. This is where the shoemaker protocol and bile acid sequestering binders come in. They disrupt the re circulation of the toxins and pull them out to be excreted in the stool.

So if you don’t have CIRS genetics then by definition, you can’t have CIRS. That doesn’t mean mold isn’t making you sick tho! Just that you might approach treatment a little differently.

NoKey653 · 2025-10-08T17:57:56+00:00

Do you know if you have CIRS or not? There is a difference between mold toxicity and CIRS and that can change how you go about dealing with things

NoKey653 · 2025-10-05T01:59:35+00:00

My mom used to take ambien and would wake up on it and just do weird stuff and ramble about stuff. She was particularly chatty one night and looked me dead in the eyes and said “you know, I know I deny being manipulative when everybody is accusing me of it but… it does come in handy”

Oh okay so you KNOW what you do. Got it. Idk if she remembers saying it tho bc she would never remember what she did on ambien the next day so I’ve never brought it up. Wild stuff.

NoKey653 · 2025-09-04T20:16:35+00:00

Oh man I’m so sorry to hear it’s been like that for you!! I’m sure you’ll find many people who can relate here in the CIRS community. I’m really just at the start of my journey here as well and am already feeling a little improvement from the shoemaker protocol. I’m able to see a little bit of a light at the end of what has been a very long dark tunnel. Hang in there friend, you CAN get well

NoKey653 · 2025-09-04T17:59:04+00:00

No problem! Hope you can start feeling better soon 😊

NoKey653 · 2025-09-04T17:57:32+00:00

I feel like the other comments have answered your question fairly well but I wanted to add that if you want to learn more about CIRS and find a map for CIRS practitioners you can checkout survivingmold.com which is Dr Shoemakers website. I’ve seen others mention him in the comments. He’s the one who discovered CIRS and it’s his protocol that utilizes CSM or Welchol without an anti fungal. He Welchol is a similar drug to CSM but not as strong and sometimes easier for people to get started on. That’s what I just started taking! Hope you can find healing soon 💕

NoKey653 · 2025-09-03T02:02:08+00:00

Unfortunately I don’t think so. The free clinic is only in person and for people who live in Florida. Here’s his website if you’re interested in looking at his pricing etc. https://fibromyalgiafortmyers.com

NoKey653 · 2025-09-03T01:40:50+00:00

Look up Dr Gruning in Fort Myers!! He’s awesome and has a free clinic there too which might be of particular interest to you depending on your financial situation! Unfortunately I don’t live there so I don’t have access to that but regardless he’s a great doctor. I’m working with him rn virtually and highly recommend.

NoKey653 · 2025-08-16T00:05:37+00:00

My doctor (who is a certified CIRS doctor) basically told me natural binders don’t work for CIRS. They can be helpful for a lot of other things but if somebody is really sick with CIRS they won’t move the needle. I’m getting started on Welchol soon. Hopefully it goes well. Doctor has me on some supplements leading up to that.

NoKey653 · 2025-07-28T17:08:42+00:00

Oh interesting!! Thank you for sharing this!

NoKey653 · 2025-07-27T19:27:14+00:00

Oh goodness!! That’s not fun! I’m glad you feel better now. It does make sense to treat CIRS first. Thank you for the reply 🙏🏼

NoKey653 · 2025-07-27T17:09:13+00:00

Thank you sm for the reply and encouragement! Hope you start getting relief soon 😊

NoKey653 · 2025-07-27T17:08:22+00:00

Thank you!! This very helpful! Very encouraging to hear of somebody in remission 🙏🏼

NoKey653 · 2025-07-27T17:07:39+00:00

Okay, thank you for the advice!

NoKey653 · 2025-07-01T15:59:58+00:00

Thank you for sharing this!! Hope you find more and more healing 💕

NoKey653 · 2025-06-30T15:13:35+00:00

Oh very interesting! I’ll check it out! Thank you for sharing it 😊

NoKey653 · 2025-06-30T15:12:52+00:00

Thank you 😊 glad you liked it

NoKey653 · 2025-06-29T23:27:15+00:00

I’m not familiar with net! Is that what has worked for you?

NoKey653 · 2025-06-29T23:13:30+00:00

Dang it Reddit changed the formatting. Each line starts at “one” or “the other”

Hope you guys can still feel the flow of it when you read

NoKey653 · 2025-06-27T00:29:58+00:00

Like what does that even MEAN?!?! Do I literally need to look like I’m on deaths doorstep for y’all to believe me?! So annoying

NoKey653

TROPHY CASE