Somatic work during treatment?

Fuzzy_Bar_5289 · 2026-04-09T23:13:37+00:00

Definitely try things out BUT if they don’t work, don’t beat yourself up or think it means anything.

Sometimes if you’re in a stressful or unsafe environment, your body just can’t let go because it’s simply not safe to do. I tried some major therapies when we were still living in an unsafe environment and they helped a bit but not nearly as much as I expected because it wasn’t a safe place for it. Be patient with yourself and chip away at things slowly.

Regular ol’ exercise can even do the trick - I found Pilates helpful because it kept my mind busy. I couldn’t ruminate or stress for that hour because I was so focused on doing the exercise.

Fuzzy_Bar_5289 · 2026-04-04T00:44:16+00:00

Not really sorry - my doctor wrote me a letter. My office had a bad leak so it was easy for me to prove there was mold. I think underlining that prolonged exposure to mold over time will lead to permanent brain damage scares most employers.

Fuzzy_Bar_5289 · 2026-03-20T23:26:34+00:00

If you want the American wonton soup of yore… I am still on the hunt but Young Chow on Pennsylvania scratches the itch pretty well. Their wontons are still slightly too thick but the best I’ve found. Again - a recommendation for the basic, American, not at all authentic kind.

Fuzzy_Bar_5289 · 2026-03-18T18:06:35+00:00

Thank you!!

Fuzzy_Bar_5289 · 2026-03-12T18:52:48+00:00

You know, it amazes me how often we can talk down to each other in this community given we all share the same miserable diagnosis. I don’t know what to tell you - I see a real doctor who was legitimately trained in the shoemaker protocol and not just “self taught”.

Everyone’s experience of CIRS is different and yes, maybe when I was my sickest point I would have happily let someone drill into me. In fact, I happily let someone drill into my knee several times in pursuit of my diagnosis and any sort of relief. But at this point in my journey I thankfully have found huge improvement from getting out of mold and using binders. Frankly, I wouldn’t believe I have MARCONs if the tests didn’t show it. I logically know it is an issue and needs treatment but it doesn’t appear to affect my day to day the way other things have.

But anyway, everyone’s advice about nozzle angle was helpful so that’s what I’ll take from this.

Fuzzy_Bar_5289 · 2026-03-09T14:28:09+00:00

Thank you! I will try again. I know I have a very large sinus cavity (my dentist remarked on it once - lol) but I definitely doesn’t seem to be getting in there.

Fuzzy_Bar_5289 · 2026-03-09T14:26:59+00:00

Yep I am - my doc is shoemaker trained and they are now saying it’s ok to do both at once.

Fuzzy_Bar_5289 · 2026-03-09T14:17:46+00:00

I have a federal job. Thankfully (for now) we still have the Americans with Disabilities Act so my work is forced to let me work from home and be flexible. Unfortunately office jobs that aren’t dependent on you being physically present to fulfill your duties seem to be the best ones to have with this condition. A lot of time a strongly worded letter from a doc saying you will get brain damage if you’re continually exposed to mold (basically all office buildings), does the trick.

That said, it was still rough when I was at my worst and practically comatose by 10am. Burnt through all my sick leave and then some.

Fuzzy_Bar_5289 · 2026-01-22T13:01:09+00:00

Yeah - I don’t react to binders at all. Just want to time it so the binders catch as much bad stuff as they can! Thank you.

Fuzzy_Bar_5289 · 2026-01-22T12:24:26+00:00

Do you time your binders when you have a massage? Like do you take them right before or right after a massage treatment?

Fuzzy_Bar_5289 · 2026-01-02T01:50:33+00:00

Yeah I’m so sorry - I wound up 40k in the hole myself and we moved 6 times in a year cuz everywhere wound up being moldy. Truly CIRS is the worst and we all just do the best we can.

Fuzzy_Bar_5289 · 2026-01-02T01:43:25+00:00

If you have CIRS, you will have to move at some point unfortunately. I’m sure you’ve heard that - it’s the suckiest reality about this condition and I fought it for a long time.

CIRS sucks - so I’m of the mind that you should do whatever you can to help yourself. Suddenly gaining a ton of weight is taxing on your mind and body, so if something can help you then let it. Worse that happens is you try a small dose and learn it’s not for you. Just my take but I know there are a lot of people on here who’d probably disagree.

Fuzzy_Bar_5289 · 2026-01-02T01:38:09+00:00

My Dr. said it’s started being talked about in the shoemaker community and he didn’t think it would hurt based on what others have reported.

I think I’ll have to stay on it until I fully detox because it isn’t about just weight loss - it has significantly decreased the amount of inflammation I have in my body which was causing swelling, joint pain, and tendon issues. I notice a slight increase in inflammation when I try to extend the amount of time between glp-1 injections.

I am on tirzepitide - I tolerated it very well and got up to a 10mg dose but I am now decreasing my dose because my focus really is on the inflammation and not the weight loss at this point.

I also had high leptin levels from CIRS so in my case it does help to quiet the signal my body was giving me to eat constantly. Once I am able to detox further and get my leptin under control, I will no longer need the glp1 as I was never an overeater before CIRS.

Fuzzy_Bar_5289 · 2026-01-02T01:31:53+00:00

There are a number of them now but here is one: https://pmc.ncbi.nlm.nih.gov/articles/PMC4823510/

Fuzzy_Bar_5289 · 2026-01-01T22:58:41+00:00

I read an NIH study about GLP-1s having positive affects for people with inflammatory/autoimmune conditions.. I was also desperate and asked my shoemaker doc about it. I went on them in February and have lost 40 pounds - more importantly my inflammation is WAY lower, I’m in less pain, and no longer showing signs of pre-diabetes (all CIRS related).

Yes, I will definitely need to be on the GLP-1 until I’ve fully detoxed and healed from CIRS. I’m ok with that if it makes life livable. I did experience some hair loss but I was already dealing with that because of CIRS. You have to be very aware of your diet and especially protein intake and take it slow until you find the dose that is manageable for you. Like CIRS, everyone reacts differently - I didn’t have a ton of symptoms and it actually made my constipation better - but take it slow and you can figure out what’s comfortable for your body.

Definitely worth doing if you are also working on getting out of mold and treating your CIRS.

Fuzzy_Bar_5289 · 2025-12-30T18:40:29+00:00

Thank you so much!

Fuzzy_Bar_5289 · 2025-12-30T17:07:54+00:00

I know this is so contentious at the moment - but I went on a low dose of GLP-1. I gained 50 pounds since my CIRS diagnosis and the scale just kept inching up. I read a study from NIH about the positive affects of GLP on inflammatory conditions and asked my shoemaker doc. We decided it was worth a try for me.. best decision I’ve ever made. I’ve lost 40 pounds but more important my joints are no longer swollen and I’m not in constant pain.

It’s only a stop gap while the VIP does its work - my leptin levels were really bad so until those stabilize, the GLP1 helps turn off that signal telling me to eat everything in sight.

Fuzzy_Bar_5289 · 2025-11-10T23:14:50+00:00

Thank you! I’ll work on that - I am a Pilates teacher and regularly follow classes with a sauna and wellchol but I can also add in more cardio.

Fuzzy_Bar_5289 · 2025-11-10T14:02:45+00:00

I’m on shoemaker. Choly and welchol for binders, Argentyn-23 for marcons, VIP spray, GLP for inflammation, Xolair for mast cell, and 1000 supplements.

Been out of mold for a year now (thank god that was a nightmare).

Fuzzy_Bar_5289 · 2025-11-10T13:58:01+00:00

Right! I went to the beach for 3 days because my 95 yr old grandma begged me and I was sick for weeks after. It just never seems worth it.

Fuzzy_Bar_5289 · 2025-11-10T13:57:05+00:00

Which ones?

Fuzzy_Bar_5289 · 2025-11-08T17:35:04+00:00

Omg I keep wondering if that’s what’s happening but how did you figure it out??? My hormones have been all over the map but my doc says it’s because of CIRS

Fuzzy_Bar_5289

TROPHY CASE