When mold illness treatment isn’t working
This is the intro post for my upcoming series on the gaps I see in CIRS treatment. Each week I’ll release a detailed post on one of the seven gaps I see as a common reason why patients remain sick after mold illness or CIRS treatment. If you tried CIRS or mold treatment and didn’t get better, this series is for you!
You did everything you were asked to do.
You tested the house. You took the binders, even on the days they made you feel worse. You gave up foods, spent money you didn’t have, and explained your illness to people who didn’t believe you. You held on to the idea that if you just followed the steps, you’d get your life back.
And you’re still sick.
If you’re still sick after mold illness treatment, or it worked for a while and then stopped, I want to say something before anything else. I’m sorry. That is a lonely and frightening place to be. You finally found a name for what was wrong, mold illness or CIRS, and the answer that came with it still didn’t bring you home.
I sit with people in that place every week. Most of them arrive carrying the same quiet question: what’s wrong with me that this didn’t work?
This post, and the series that follows it, is my answer.
It isn’t you
Nothing is wrong with you. You didn’t fail the treatment.
You may have been called a “non-responder.” This describes where your treatment stopped. It says nothing about where you get to go from here.
It isn’t the protocol’s fault either. I’m trained in the Shoemaker Protocol and I use it every day. It’s the foundation of my work, and I’m grateful for it. But a foundation isn’t a house. The protocol is very good at certain things. Getting your life back asks for more than that.
Over the years I’ve noticed the same seven things missing, again and again, in the stories of people who are still sick after mold illness treatment. I call them the gaps. Each gap gets its own post in this series. Here’s a first look at all seven.
As you read, notice which one(s) sound like your story.
The 7 missing pieces in mold illness treatment
1. You were treated like a machine with a broken part
Most of medicine works like car repair. Find the broken part, fix it, send you on your way. That’s exactly what you want for a broken arm.
But you’re not a car, and CIRS isn’t a broken part. It’s more like a garden that has stopped thriving. The soil, the water, the light and the weather all matter, and they all affect each other. When care only goes looking for one broken part, a lot of you gets left out.
2. You were handed a plan and left to do it alone
Knowing what to do and being able to do it are very different things. CIRS treatment asks a great deal: test your home, clean it, maybe fix it or leave it, take medications on a schedule, change how you eat. And it asks all of this from someone who is exhausted and foggy and barely getting through the day.
If you stalled, it doesn’t mean you didn’t want it enough. It means you needed someone walking beside you, and too often nobody was.
3. Nobody looked after your gut
The main medicines in CIRS treatment do their work in your gut. Yet the gut itself is rarely part of the conversation. If your digestion has been a struggle through all of this, that isn’t a side issue. It deserves care of its own.
4. Your nervous system was ignored, or blamed
Maybe you were told it’s all anxiety. It isn’t, and I’m sorry if anyone made you feel that way.
After years of being sick, your body learns to brace. It stays on high alert, the way you might after a car accident, even once the road is clear. That isn’t weakness, and it isn’t in your head. It’s a body that has been through too much. It needs gentle help to settle, and it should never be blamed.
5. Nobody explained why your body is still on guard
“I moved out of mold. Why am I still sick?” I hear this more than almost anything else.
Here’s the simplest way I can put it. When your cells sense danger, they stop their everyday work and switch to protecting you. It’s a bit like a town during a storm warning: the shops close and everyone stays inside. That’s a smart response. The trouble comes when the storm has passed and nobody has sounded the all-clear.
Your body isn’t broken. It’s protecting you, and it’s waiting to hear that it’s safe. This is what the Cell Danger Response is all about. And it’s an integral part to healing from CIRS. If your cells never get a safety or all clear signal, you’ll never truly heal.
6. You were told recovery would be a straight line
Step one, step two, step three, better. That’s how the plan looks on paper. Real recovery has good weeks and hard weeks, and sometimes a step back before the next step forward.
A setback doesn’t mean it’s all coming undone. It doesn’t mean you did something wrong. Healing has never moved in a straight line for anyone I’ve worked with.
7. Nobody helped you take your life back
When you’re very sick, other people end up holding parts of your life for you. That’s okay. Often it’s exactly what you need.
But getting well means, bit by bit, taking those pieces back. Trusting your body again. Making plans again. Spending less of your day thinking about being sick. That handover rarely happens by itself, and most treatment never plans for it. You deserve help with that part too.
What all seven have in common
If that felt like a long list, take a breath. I’m not handing you seven more things to fix.
All seven gaps point to the same thing. Your body has not yet been given enough reasons to feel safe.
That’s the idea at the centre of my work, which I call the Cell Safety Response. Safety comes first in your home, then in your cells, then in your nervous system. When your body gets that message clearly and in the right order, it can begin to let its guard down. And when the guard comes down, healing has room to happen.
The last post in this series shows how the pieces fit together.
You’re not out of options
If you recognized yourself in one of these gaps, or in four of them, I hope it lands as relief. There are reasons you’re still sick, and reasons can be worked with.
You don’t need to start over. You don’t need to try harder. You need the parts of care that were missing.
I’ll take each gap in turn over the coming weeks. For now, I just want you to know this: you are not an impossible case, and you don’t have to figure this out alone.
If you’d like a simple place to begin, my free guide to CIRS walks through what to test, what to fix first, and what to expect along the way. Download the guide here.
And if you’d like to talk through where you’re stuck, you can book a discovery call.
Common questions from those still struggling with mold illness or CIRS
Why am I still sick after mold illness treatment?
Usually it isn’t one reason. The most common ones I see are an ongoing exposure nobody has found, a plan that was too much to carry out alone, a gut or nervous system that never got attention, and a body that is still on guard after the danger has passed.
Does being a “non-responder” mean I can’t get better?
No. It means the treatment you were given didn’t get you all the way there. In my experience that points to something missing from the care, not something wrong with you.
Do I have to start CIRS treatment over?
Rarely. The work you’ve already done still counts. The next step is finding which pieces were missing and adding them in the right order.
