I’ve seen three versions of great success with mold illness in the last year. (One is mine.) Each story required an incredible amount of focus, investment, and discipline. I think these stories highlight that if you want the best chance of recovery from mold illness, you have to really commit to your chosen path.
Mold illness is still on the cutting edge of science, and it does not release many back to health. My advice to anyone who feels like they are stuck would be to pick a winner, whose path you are able to follow, and don’t deviate.
Success Story One: Age 24 and Feeling Fantastic: How Addressing Mold Got Rid of My Lyme Symptoms After a Decade of Illness
Severely ill with Lyme disease since age 13, she went from being unable to walk and wheelchair-bound to being able to run and do yoga at age 24 because she finally treated her mold illness. I love Rachel’s story, but it cannot be overlooked that she had to be extremely disciplined to make this astounding recovery. And her recovery came at great emotional and financial cost.
Her doctor advised her that she had to stay out of any building that had not been tested safe mold-wise until she had sufficiently recovered.
“This time Dr. Patel laid down the law. For at least the next six to nine months I could not step foot inside a building that hadn’t been cleared for mold. That meant no grocery stores. No movie theaters. No restaurants. Nothing.”
But it actually was thirteen months before she got the okay from her doctor to go into buildings!
“Eventually, after thirteen months of no buildings, Dr. Patel gave me the go-ahead. I could now buy my own groceries! I could talk to random people I didn’t know in the grocery store, who had no idea that I had been cooped up inside my apartment for the past year!”
It was this discipline that gave her the ability to run and dance, to get off all of her antibiotics. I don’t know the logistics of how she accomplished her thirteen months of seclusion, but I’m sure it must have taken an enormous amount of financial, emotional and errand-running support and dedication from friends and family to pull that off.
Success Story Two: Celebrating Ten Years of Recovery
This story can be found on Dr. Shoemaker’s website here.
It is the story of the family who embraced and completed Dr. Shoemaker’s groundbreaking protocol with dogged determination. Testing every building their family went into, losing their possessions and homes twice, and paying for the protocol decimated their retirement savings.
Andrea Fabry did a post about ERMI and HERTSMI, the tests this family used – and still uses – to keep their family safe. This is not cheap. ERMI tests cost $290 each and HERTSMI tests cost $155.
Imagine how many buildings this family has had to test over the last 10 years. It could easily be hundreds of buildings. If each test costs $155 or $290… Well, you do the math.
They worked so hard, gave up so much, and endured so much that they’ve grown weary of (and I think unfairly harsh when) hearing people complain that treating mold illness is hard.
“Next you have the whiners, who are unwilling to make the lifestyle changes necessary and then complain endlessly about how they can’t “tolerate” CSM, BEG or VIP. Really? Ask a cancer patient about how they feel after chemotherapy, or a Hepatitis-C patient after twelve months of interferon and ribavirin.”
Though the Shoemaker Protocol uses pharmaceutical interventions, it is far from a “take a pill and forget it” treatment for mold illness. It takes discipline and a tremendous financial investment.
I have to give major respect to this family for their hard work and determination. For being willing to spend every penny they have to give their children a chance at having a rewarding life again. In this article written about their lives after 10 years of recover they write: “It’s hard. It’s all hard.”
Yes it is.
Story Three: My Story
My story is also filled with loss and discipline followed by incredible recovery, but I chose a different path: following the Erik Johnson Protocol. This protocol, based on Erik’s own recovery and his Army chemical weapons training, relies on always having a mobile option. It relies on learning to sense mold toxins in the way the Army taught their soldiers to sense nerve agents. It relies on decontaminating within minutes of exposure. On avoiding plumes. And on protecting your sleep space at all costs.
Like the above stories, I also gave up my home and possessions. I also had to invest a large amount of my savings in recovery, but instead of staying in an apartment for over a year or spending tens of thousands of dollars testing buildings, I escaped into nature. And I studied every word Erik Johnson wrote in his book Erik on Avoidance until I could learn to detect, with my own senses, the biotoxins that had wrecked my immune system.
Every single time I got a mold hit, I decontaminated immediately. No matter how cold it was. No matter where I was. No matter how embarrassing it was.
If I felt I couldn’t decontaminate something, I threw it out. I didn’t question my senses. I trusted that Erik’s approach could work for me, until I didn’t need to trust anymore. I trusted his advice that “nothing beats steel and styrofoam” in the details of how I converted my cargo van. I trusted his admonition to focus on mold first and to not worry too much about my MCS – that the MCS really is a product of my immune system being so tanked from mold. I trusted that this process of spending time in pristine areas uninterrupted would eventually give my immune system enough breathing room to enjoy spending time in civilization again – that I wouldn’t be stuck living in my nature-based exile forever. I trusted until I knew it from my own experience that I had found the right way for me. But it took about six months of trusting until I really knew that.
It was not easy at first. It was very, very hard.
It was costly, but not nearly as costly as testing every building I might ever have to go into. And it did require a retreat from “normal life,” but my retreat was spent in beautiful, pristine, outdoor spaces.
Erik warned in his book to leave yourself some funds to escape into something like his MECU or my cargo van while you still have enough money and health left to make it work. I heeded his advice. That my journey to health has been so emotionally rewarding was something I was not expecting. I think of the three stories, my way (Erik’s way) is the cheapest by a pretty wide margin, but it still has come at a great financial cost. And it has required fierce discipline.
You have to pick a path.
You have to stick to it.
You have to be willing to PAY the financial and emotional expense it requires.
And you have to know that even if you do pick a path, there is no guarantee it will work. This illness is still on the cutting edge of science. But if you don’t pick, “life” will pick its own path for you and it is unlikely it will lead to the kind of recovery the three of us experienced.
In my mind it looks like this. A person with mold illness trying to figure out how to regain her health is like a pencil balancing on its tip. The pencil is going to fall. Physics demands it. There are a few places it can fall that have led to recovery for others. (And surely there must be others that we haven’t found yet.) If you seek a remarkable recovery, my advice would always be to follow the winners. Pick one of their paths to success and commit to it. When you do that you push the pencil in that direction. Otherwise you will be picking a path by default.
I’m incapable of expressing in words how much my heart wishes for all of you to be well again. For me, following the Erik Johnson protocol has been so much more than a cessation of suffering. It has been a return to being alive. It has also been a spiritual and emotional awakening – I really can’t remember ever being this happy at any other time in my life. But it wasn’t an accident that it worked so well. I committed to it. I was hyper-focused and hyper-disciplined in the face of overwhelming odds. I picked my path and stuck to it as if I were climbing a rock wall with no ropes.
If you want a remarkable recovery, you must choose a path. You must stick with it. You must be willing to pay the financial and emotional expense it requires.
And you have to know that it is a privilege to be able to choose. This is not an illness that releases many back into health. Pick your path and walk it with gratitude.
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