r/CIRS

How often (and for how long) can you handle being in an exposure while still progressing in treatment?

I’m in a safe home (tested on each floor for all biotoxins), work from home, and have a very small social network right now. Summer makes things easier because I can socialize outside. I recently started reacting to our church building though (our church is located in a public school). Service is only 1 hour and 15 mins 1 time a week.

I don’t fail the VCS test after the service, but today I did a VCS test while in the building and I did fail. I’ve been sitting in the very back of the church building in the doorway so I’m breathing in a ton of fresh air and I still failed the VCS test standing there. It’s been hard to find a good church community so I want to keep going here. I plan on going somewhere else temporarily while but we try to fight the school board to remediate. I’ve still been able to progress with treatment (I’ve reduced over half of the stimulating meds I’ve been on for over a decade) while going to this Church (I didn’t realize I was reacting before because MARCoNs intensification symptoms have been so unpredictable). This has had me wondering how often you find yourself in exposure and if it’s delayed your treatment or if you’ve still been able to progress.

Did somebody heal with moldco and share his experience

Dudes … I switched from 5am dose to 10pm dose and that’s the best sleep I’ve had in years …. I didn’t wake up one time. But when I take in the morning about 4 hours later i feel detoxy.

Hi can anyone share which Dr helped you the most with moving the needle for Babesia? I think it’s the reason why im stalled in my CIRS treatment. I’m 73 and I’m so sick. I have no life as I once knew and can’t even travel to see my family. I don’t have many years ahead and I’d do almost anything to have even a little bit of time to feel well again. I’ve been on 25 drops Cryptolepis 2x day + Japanese knotweed 2x day - both about 6 months and no relief. Please is there anyone who can give me some hope? 🙏🙏🙏

I have had crazy mold numbers making some progress with intracinasole and ozone iv

But my blood pressure is severely high

Has anyone had similar?

Hey I’ve recently lost 12 lbs the last few weeks and I’ve noticed ever since my pots resolved but now that my heart is normal I feel like hell because I’m used to functioning with a high heart all the time .. I assume for me pots was driven by insulin resistance which has improved a lot over the last few weeks but j feel like hell and my energy is lower than it was before.

Has this happened to anyone with CIRS ???

can you get back to a normal life if you have the genetics for this? i just feel if you get cirs without the genes you have a better chance. i have 2 MOLD ONLY genes and i just have this bad feeling im not going to get back to normal no matter how hard i try. i’m so depressed and just cry 247.. mold is in every home, every building. i don’t want to live like this if i can’t just get back to normal again.

Still trying to work out what’s driving my fatigue and whether CIRS is the whole picture or only part of it.
I’ve been out of the mold environment for a while now (home at least as I moved) and some things have definitely improved but the fatigue is still my biggest symptom. It’s especially noticeable at the gym, I have strength, but it feels like someone pulled the battery out from the very first exercise. I also often get fatigue after eating, which makes me wonder whether this is more gut related than I originally thought.

Current findings:
Positive MARCoNS +4 but been treating with silver for 2 months

GI testing showed dysbiosis and very low butyrate
VIP: normal (16 pmol/L) = 53 vip I think??
HLA-DR/DQ: 1-5 and 15-6-51
Still need to test MSH
eGFR has repeatedly been in the 60s

I’m following the early Shoemaker protocol (CSM, binders, nasal treatment, etc.) and am now shifting more towards rebuilding the gut with PHGG, butyrate, probiotics and L-glutamine.

Has anyone had persistent fatigue like this even with normal VIP? Did improving your gut dysbiosis make a significant difference? Or could this be more related to the hypermetabolism/ hypometabolism??
Interested to hear from anyone who’s had a similar experience.

Hi everyone,

I can’t seem to get past 1.5 welchol 2x a day. I get irritability, depression, etc.

I’ve also experienced flares in psoriasis and ammonia like body oder. Any advice?

I’m taking omegas and NAC.

It seems my detox pathways are very backed up. Any help or support would be greatly appreciated!

For context I’ve been out of mold for 3 years now and healed a bit on my own. Started welchol 2.5 months ago.

Has anyone used the binder and found that it works? I recently switched from zeolite … mostly because they could not provide a third party COA for the batch and also because I had used it for 3 months already. Now I’m using activated charcoal which is fine but I can only squeeze it in once a day. I was recommended Cellcore by a naturopath. I have CIRS, but I seem to tolerate supplements ok.

I cannot afford $250 per 15 min to see Dr. H at Beyon Mold and haven’t been able to figure out how the monthly memberships really work on top of each session with a provider? I am stuck in the Shoemaker process and my current CIRS provider doesn’t seem to know what to do at this point. It seems like something in my sinuses ( likely MARCoNS ) really inflames my brain structures and has my nervous system constant activated. I do vagus nerve and brain retraining tools to the best of my ability daily but that isn’t the root issue. I also have literally zero testosterone and need it but haven’t done TRT because I have androgenic alopecia and my har is falling out even without it. I used some bioidentical E and P. I notice all the nervous system stuff is more intense early in my cycle when E and T drop. I need to restart treating MARCoNS because it’s wreaking havoc causing the ongoing inflammation but couldn’t tolerate the treatments because I think the inflammation was just pushing my nervous system constantly into sympathetic state. That’s why I leaned some brain retraining and stopped treatment except for Propolis. I feel like I need someone who can actually can help me figure out how to tolerate treatment and if hormones is the other missing issue. I live in an area very limited so I have the best provider I could before Beyond Mold came into existence.
Anyone know how they work if you can’t afford to work with Dr. H?
Are they only helpful if you can see Dr. H?
Anyone able to clearly explain how pricing, etc works?

Do you see the same provider each if you aren’t seeing Dr.H?

Also, anyone have insight into my nervous system issues and if hormones is a big part or it’s all whatever is deep in my sinuses?

Thanks so much for reading!

So i got HLA tested and put the results in the calculator and it came back LOW MSH. Anyone else have that?

Makes sense because i get extreme sinus pressure. Also tested positive for marcons. Im binding and treating now.

So i guess i just have a gene where im predisposed to low msh?

That sucks. LOL.

Do you also feel like someone is messing with your body? For example, I had chest pain while resting; the tests came back normal, but now I get pain during exertion, so I have to go get more tests done far away from home. It’s the same for the rest of my body—but damn, what is this? Is it ever going to stop? I haven't felt normal for a single day in the past year. What did I do to deserve this? Okay, I’m not the best person in the world, but I just want to know: WHAT IS MY ILLNESS? That’s all I’m asking. I’m sick of not knowing what’s wrong with me.

How do I know which anti-fungal to take? Are there tests to determine which one is right for my situation? I really need this.

The Shoemaker squad are going to have a field day with this one.

I believe pushing this narrative that the Shoemaker protocol is the only way to heal is immoral.

The whole basis of mold/wdb illness is that some people can be totally fine in mold and others the complete opposite. I.e. everyone’s bodily make up is different.

To then say that there is only one way to heal, despite the premise of the illness being that different people handle toxins differently is not only illogical but irresponsible.

Cholesterol is a hugely essential molecule for both immune function and brain function. For the first line of treatment to be a medicine that strips your body of an essential chemical is ridiculous.

I’m not saying you can’t heal on Shoemaker, but to push this narrative that it is the only way is both wrong and irresponsible to our sick peers.

It pushes people to think if they can’t get all these labs or a prescription binder they’ll never heal, causing them to lose hope and HOPE is an essential part of healing.

There are multiple ways to heal everyone - just like there are for almost all other ailments.

Also, think of the saying ‘if the shoe fits’ and shoe-maker…..

I have been sick for 3 years since have mold in my bathroom following cancer and chemotherapy, which I had assumed was what had made it so hard for my body to deal. Now, three years on and I have been diagnosed with MCAS, CFS and POTS. I have recently been thinking about CIRS and wondering if that is not where the upsteam issue lies (drs of course only want to treat symptoms).

I have ordered a HERTSMI-2 test and will make sure that my condo unit is now ok, or I'll move out. Likely stay with my bro till I figure this mess out. I have been wanting to sell my condo for awhile now as I have been too sick to manage it. I work half time and the other half is spent on my sofa.

I wonder if anyone might have suggestions re going it alone with the treatment or using an extremely expensive Shoemaker specialist. I'm currently loading up with Omega-3s and then would like to start CSM at a tiny dose. There is what sounds like an excellent clinic - Fatigue to Flourish - in Alberta, a few hours from where I live and 30 min from where my brother lives. But is would cost me about 20 k over a year, which would be difficult.

I'm just wondering really if any complex illness people out there have gotten better - not necessarily fully - going it more or less alone with the Shoemaker. And what test have you gotten to confirm that it is CIRS?

Thank you

Coming from a long healing journey (Long Covid, MCAS, mold, CIRS), I'm about to start cholestyramine right tonight. I've been taking natural binders for over a month. Activated charcoal (1.2g), and zeolite (0.75g). I've had strong reactions to both. I guess I'm fully loaded with mycotoxins. I'm quite stable now.
Anyway, for someone pretty sensitive, what's the average starting dose for day 1? Just to have a real world reference point

Hey friends I have recently discovered the room I’ve been sleeping in has significant mold. Have moved to a different room in the house and working my way through cleaning. Hoping to get professional inspection, remediation and personal medical professional help.

Do people have recommendations for these guys in Melbourne/Australia?

Note: I also have ME/CFS, POTS and MCAS.

Any advice appreciated! ❤️

I see this great guy have Parkinson maybe all his symptoms that he said was mold was early signs of Parkinson . Or maybe the mold caused Parkinson