[Hello everyone. Many of you haven’t heard from us in some time. We hope that the following story explains some of what has been going on with us this past year.]
Imagine standing in front of your house. It contains your memories, your belongings… and you can’t go in. You want to, desperately, but you know what will happen if you do. First, you’ll start to feel burning pain in your wrists and the rotator cuffs of your shoulders. Then you’ll have stabbing in your deltoid muscles of your upper arms, followed by numbness and tingling in your left arm and hand that ends in the upper left chest. Your vision will start to go blurry. From there, if you stay longer, it’ll be hard to breathe and you’ll feel faint.
And that’s not the worst of it.
The next day, even if you leave, you’ll wake up feeling like you ran a marathon. Incredible muscle and joint pain will course throughout your body; pain so bad you’ll cry and grit your teeth to roll over in bed. It feels like fire is in your spine, burning into your left hip and out your left foot. The base of your skull aches and your neck becomes unstable, clicking with each turn as pain radiates from it. Finally, the muscles of your upper back will start to clench and burn.
You’ll be unable to think clearly and will stumble finding words. At its worst, you’ll be dropping things and feel like you’ve had a frontal lobotomy. Then later in the day, you’ll start feeling like you’re dying and begin sobbing uncontrollably. Thoughts of suicide come up from nowhere and you start to wonder if you’re sane.
This is not a dream for me . This extreme reaction has been my life for the last six months and haunted me in lesser or more isolated forms for the past three years. It is a pattern we’ve been through many times. One that has now led Tod and I to give up our house, all our belongings and begin my true journey of healing.
Let me start from the beginning. For those of you who know us well, you’ll know that I’ve been ill for over ten years with IBS (Irritable Bowel Syndrome) and random problems like fatigue that would keep me in bed a week and horrible canker sores, up to 30 at a time.
During those ten years I visited an amazing array of western and alternative medicine doctors and practitioners. Everyone tried to help, but nothing seemed to stick and many of the protocols – diet, herbal, conventional – often left me feeling more ill.
And those were the good old days, when I still functioned normally most of the time.
It’s different now.
Upon returning from our trip to Panama, I was strangely desperate to get rid of our house and stay out of it. I slept in the van for over a week because I didn’t want to be in the house. Many people thought I was being unreasonable and that I just wanted to stay on the road. The truth was much darker- on some level I knew the house would make me desperately ill.
Within six months of our return I was diagnosed with Fibromyalgia (chronic joint and muscle pain) and Chronic Fatigue Syndrome. In the next three years I would also be tested for MS (Multiple Sclerosis), Lyme disease and brain tumors.
At my worst I could barely speak and it was a challenge to walk across my bedroom. I was in constant pain and felt like all my life energy was being drained out of my body. I again tried many treatments, hoping to utilize the best of integrative medicine. While many seemed to help for a month of two, they would then stop working and I was even worse off.
The worst part was the isolation. I didn’t appear sick but was trapped at home and unable to explain to anyone what was wrong. Social plans were often cancelled and we eventually stopped making them due to the unpredictability of my health. It was difficult for friends to understand.
After two years of this I revisited my early concerns about the house and the potential for mold. But how could our beautiful home be moldy, we asked ourselves?
The Real Problem
When we were in Guatemala three years before, I woke up one morning in a panic and told Tod that our renters were gone.. Of course, there was no reason to believe this, they had signed a year’s lease and seemed quite happy with our home. However, after a quick phone call, we discovered that they had indeed moved out without notice. Given that it was the one of the biggest winters on record, not having someone taking care of the house was a problem and our usual ice dam issues grew enormous.
When we eventually returned home, there was an area of yellow on the ceiling of our master bedroom showing the water damage from the winter. A contractor we called about fixing it said not to worry about mold because we live in such a dry climate. Unfortunately, this well meaning advice was wrong.
Much later, when the mold remediators tore into our bedroom, they found over two square feet of mold. Plus, there was water damage to one third of the ceiling, walls and wood floor. It may not seem like much but we learned that over a million spores can live in one square inch mold
To make matters worse, we later discovered four inches of standing water in our crawl space. It turns out we’d had a freeze break on one of our exterior faucet and whenever we left the water on for long periods of time (i.e. filling the pond or hot tub) it filled our crawl space. In retrospect, we should have known when our end-of-the-world food stash showed signs of water damage and some plants were growing in our crawl space.
It’s hard to believe that in that beautiful house I was getting hit from above and below by mold, mycotoxins, bacteria and other particles that create the toxic soup known as water damaged building (WDB) or sick building syndromes.
Looking back, it turns out my beautiful office in Hailey I’d had for years had a leak in the ceiling tiles and air venting system too. I had spent almost all of my days in a water damaged building of some sort, not knowing what it was doing to me.
The Path to Discovery
So how did I sort all this out?
In December of last year we bought our dream camper rig – a 1997 Tiger Provan in excellent condition. It only had one problem – it was from Seattle. A window leak and some black mold on the fiberglass roof outside seemed like minor issues at the time for the great price we paid. Wrong.
I should have known when I could only drive it to my parents’ house three hours away before I started feeling really ill…and by the next day I was exhausted, in bed, and felt like I was going to die. Tod had to fly in to drive us back home.
Then, on my birthday, we took it camping…in a rainstorm. I started to have panic attacks, flash-back like memories, and again, was sobbing uncontrollably. My muscles hurt so bad it felt like someone had been punching me and pouring fire in my joints. This was the worst of the worst.
It seems obvious now, but suddenly we realized that this wasn’t just my mysterious symptoms coming up again. It was something in my environment affecting me. Something was wrong with this vehicle.
Shortly after, I attended a meditation retreat in coastal California. Within hours of being on the property I started to have the neurotoxic physical and emotional symptoms again and had to leave. I finally started taking seriously the connection between my environment and mold.
Finally, three years too late, we had the mold remediators come in. I mistakenly believed their statement that it was safe for me to stay in the house. While it may have been safe for someone else, within hours of them opening up the ceiling the horrible symptoms started again, worse than ever. I had to flee my home.
I spent February living with my family in Washington while the remediation was done. This was when I discovered Ritchie Shoemaker’s book Surviving Mold. I asked my doctor to approve some of the recommended tests. After a quick blood draw it was clear: I not only had two mold susceptible genes but all three test results fit the pattern of mold poisoning.
After the remediation was completed I finally returned home. I did okay for about 4 days then the symptoms started again and we couldn’t figure out why. This was when we discovered the second blow: the water in the crawl space. As it was spring break for Tod, I left for Washington again while he drained the crawlspace and left a dehumidifier running for the week to dry it out completely. Within seconds of opening the door upon our return, I felt like I’d been hit by an invisible wall. I pushed through it – as I am known to do – only to have difficulty breathing by the morning. It was then we realized our tragic mistake. The dehumidifier had dried the crawl space but also pulled the dust, mold, mycotoxins and bacteria from below and dispersed them throughout the house. That night I left home again, not knowing it would be for the final time.
Desperate for a solution, I went into research mode as best I could with my severe symptoms. I discovered a website written by other mold refugees: http://www.momsagainstmold.org and emailed the author, Andrea, for advice on doctors. She had been through it all: from the strange symptoms, to the disbelief, to finally leaving her home and fleeing to Arizona…and all of this with her family of nine. Andrea referred me to a board certified family practice doctor in Santa Barbara who specializes in mold/environmental illness and, most importantly, had also been through this herself.
My first appointment was on April 15, 2011 and lasted six hours.
Since then, it has been quite the roller coaster ride.
Once out of the house, we moved through 5 hotel rooms, eventually learning that we were cross-contaminating each one by bringing our belongings with us. It was then that we realized we had to get rid of everything. One of the hardest moments was standing in the supermarket aisle in our hastily bought new clothes, buying toothbrushes, toothpaste, and shampoo. I just cried because it all felt so surreal.
Our first priority was to find a safe place for me to live. This was more difficult than we ever imagined. We’ve looked at over 40 rentals in the Wood River valley and have yet to find a place I can live. We even spent a trial night in one, only to leave after a couple hours. Between mold, water damage in the roof or crawl space, and chemical sensitivities we knew we would have to get creative.
For now we have settled into a little 19 foot Airstream trailer. A lot of factors made this our best choice. First off, I could be in it without getting sick because it is truly green construction with very little offgassing! Other new RVs or trailers made me ill right away. All of the used ones smelled musty, which is a warning sign of potential mold. The walls are metal so we don’t have to worry about condensation breeding mold on them. It’s small and easy to keep clean. And finally it offers the mobility needed to visit friends, family and doctors with a safe place to live and sleep. We were blessed enough to find new one in Spokane, WA that had been sitting on a lot for 25% off too. So that is our home for now and while we’ve had some water leak scares, it appears we’ve managed to catch each one early enough to prevent mold formation. By the way, her name is Hummingbird, or as the license plate says: HMNBGRD.
Another major issue was transportation. We needed something to pull our Hummingbird home. For the truck, we originally bought a new Toyota Tundra that was all vinyl and rubber mats that would be mold free for life. Unfortunately, we hadn’t factored in the chemical sensitivity issues and soon realized I wouldn’t be able to tolerate the off-gassing. That new car smell isn’t just a smell. It is actually volatile organic compounds (VOCs) that are toxic. After two months I still wasn’t able to ride in it at all. In searching for a replacement we looked at 60 used trucks before we could find two we could test drive and one we could buy: our 2006 Chevy Silverado half ton.
We are currently looking for another Subaru as our run around car. We bought one in February near the start of all this but it has, predictably, become cross-contaminated from Tod’s visits back to the house. Having to buy yet another vehicle (this will be our sixth in a year) is part of what is so crazy making about all this.
So what really is a mold diagnosis? When looking at mold problems there are really four main issues:
1. Mold allergies – either Type 1 (immediate and usually severe, like a peanut allergy) or Type 3 (delayed onset so it is difficult to link it to anything). I have no Type 1 allergies at all (to over 35 common items), but do have a bunch of food sensitivities which are different. Interestingly, mold did not show up as a problem as a Type 1 or Type 3 allergy (i.e., I could eat mushrooms without any problems).
2. Mold infection, including Candida. The Mayo Clinic has research suggesting that over 90% of sinus infections are fungal in origin. My sinuses are growing a fungus known as Bipolaris which is found in water-damaged buildings. Strangely, my doctor has never seen it in a person before but hopefully the prescribed nasal antifungal will get rid of it.
3. Mold poisoning (Mycotoxicosis) – usually involving genetics that cannot identify mold and mycotoxins, thereby failing to alert the body they are present and need to be removed. This is my biggest issue.
4. Chronic Inflammatory Response Syndrome (CIRS) – Dr. Shoemaker considers mycotoxicosis a bio-toxin illness that causes an unchecked chronic inflammatory response in the body. Mycotoxicosis leads to CIRS. This explains the pain I experience and preliminary research suggests it may cause up to 80% of the cases of chronic fatigue syndrome and fibromyalgia. It is less a cause of illness as an explanation of what happens as a result of the mold poisoning.
Note that you can have more than one of these problems in play…I seem to three of the four right now.
My current diagnosis is Mycotoxicosis and Neurotoxic Brain Injury (NBI) which is also known as Multiple Chemical Sensitivity (MCS).
Mycotoxicosis literally means mold poisoning but actually isn’t as much about the mold as the toxins produced by mold. Mold and mold spores can be removed by remediation; mycotoxins on the other hand can only be destroyed by 500 degree heat and are related to epoxy so they act like glue. This is why once you’ve been poisoned and you have the bad genetics I have, you often need to just get rid of everything. If I am even in the same room as anything from the house, the symptoms begin again. It’s really quite crazy.
To confirm this diagnosis, I did a urine test that is used in court litigation cases. They test for parts per billion of three of the most dangerous types of mycotoxins. I was positive for 2 of the 3, one of which is trichothecenes. These are produced by the infamous black mold Stachybotrys chartarum and known as T-2 mycotoxins. T-2 mycotoxins are nasty poisons that make up 80% of the Department of Defense’s bio-warfare program and are the foundation for Yellow Rain. They kill you by blocking all forms of protein synthesis in the body. Nasty stuff.
The NBI/MCS is less well understood. The current dominant theory is that a toxin-induced loss of tolerance (TILT) results in the breakdown of my body’s detoxification pathways. Luckily, I seem to be able to tolerate being around perfumes and other strong smells but pesticides and herbicides send me running. Part of the problem with NBI/ MCS is that the blood-brain barrier has been compromised (think of having swiss-cheese like holes in it) and that is why one can react so quickly when exposed to molds or other water damage building components.
Although most of you have never heard of mold poisoning, we are finding it is more common than realized. One leading expert in the field, a brilliant toxicologist named Dr. Thrasher, calls mold exposure our newest pandemic. He cites one example of our nations aging school buildings making children ill, estimating roughly that 30-40% of schools have water damage in them. An even larger problem is the ubiquitous drywall used in construction – it is the perfect food for mold to grow on if it gets the slightest bit damp. While many are not affected like I am, some are and haven’t been correctly diagnosed. Regardless, it’s clear that I am not alone in this.
Pieces of the Puzzle
Many people want to know if I am getting better from just being out of the house. The answer lies in my previous exposures and my genes.
It turns out that about 24% of the population has genotypes that are unable to detoxify mold. So when Tod is exposed, his body finds the poisons and removes them like any other toxin. He doesn’t get sick. Mine doesn’t even notice the intruders so they just build up in my body. In addition, I not only have the exposure from the house and my office but from many other experiences in my life.
As a firefighter at the age of 23, I was cleaning out Forest Service cabins in Washington when I became extremely fatigued. I felt like I had the flu and had to crawl a quarter mile from our tent to the main compound for help. No one could figure it out and I slowly recovered over the course of 3 weeks. Looking back, I now know it was due to the mold exposure in those cabins.
After my late husband Kevin died, I had chronic bronchitis and pneumonia. I weighed only 107 pounds. My mind felt like it wasn’t working right and I was emotionally unstable; all symptoms readily ascribed to grief. The truth was that I was being poisoned by straw bale studio I was living in at the time – the very place we had built in Kevin’s honor.
Even as Kevin died, I now understand that his body was being affected by the moldy environ too. He coughed up blood while he was dying which perplexed his doctors. This is not normal for a brain tumor patient. However, it is normal for someone suffering from fungal colonization of the upper respiratory tract and lungs. His already weakened immune system couldn’t fight off the the toxic mold emanating from the straw. Even as the brain tumor caused his death, his body was alerting me that something was wrong with the strawbale studio. Too bad we couldn’t interpret the signs. It wasn’t until six months after moving back into the main house that I started feeling normal again.
And most recently, I had 8 years struggling with irritable bowel syndrome (IBS). Coming on the heels of my first trip to Guatemala and that dysentery ward stay, everyone assumed it was caused by parasites I’d been exposed to. However, it turns out that IBS is yet another sign of mold poisoning. I think of it as low grade exposure because I was able to live a normal life otherwise; this fits the low grade exposures at my office and house at that time. Of course, yet another warning sign was that none of the conventional and alternative (naturopath, chinese medicine, energy work) treatments for IBS provided sustained relief either. We were simply missing the root cause.
This is what confirms my diagnosis of an environmental illness. Aside from the many tests, it explains so many of my life’s health mysteries. My doctor has described it as a cup that is finally full. After years of exposure from our home and throughout my life, my cup is overflowing with toxins and making me sicker than I have ever been.
Treatment of mycotoxicosis and NBI is three-pronged consisting of:
1 – Mold and chemical avoidance – selling everything we own and getting rid of our house, plus monitoring my environment closely. While this seems dramatic, it is the only effective way to ensure recovery. Most people use all their savings trying to remediate their homes, only to end up having to leave anyway. This is a very common occurrence when you have the genetic predisposition that I have. Most remediations after long term exposures fail, according to doctors and toxicologists I talked to, because it is impossible to remove the mycotoxins. This was true in our case too. We realized just how bad it was when Tod spent four days back in the house preparing for the auction and began to experience hip pain, lesions on his face and brain fog. These symptoms abated once he left the house, but were the first symptoms I developed.
2 – Removing toxins from my body – using binding agents such as activated charcoal and cholestyramine. Glutathione acts as the master antioxidant that I drink, spray up my nose, and inhale into my lungs. I also use anti-fungal nose-sprays.
3 – Rebuilding the broken down parts of my body – using careful lab testing to determine what deficiencies my body has and supplementing those specifically. We also found many food sensitivities that are a common occurrence with mycotoxicosis (including to coconut oil, oregano oil, garlic and yeasts known to help the body (like S. Boulardii). These were all supplements I’d taken before to help my body heal, which were inadvertently doing more damage.
The Way Forward
My current prognosis looks at a 3-5 year recovery period. Why so long? My understanding is that my broken down detoxification pathways can only handle so much at a time so I must go slowly. If I detox too fast, I get much sicker. On top of that, any mold infections can only be broken down in the mycelial form and that can take a long time. To be honest, we’ve been in so much chaos just trying to get a safe and stable base set up I haven’t been able to explore this more but intend to do so. My goal would be to shorten that to 2 years.
Our short term plan is that unless we find a rental this fall, Tod will stay in Hailey for the winter and I’ll take the trailer south. I hope that being out of the snow and closed buildings for a year will help me heal. As for now, we’re camping on forest service lands outside of Ketchum next to beautiful rivers and trees. And of course, we can’t complain about that!
The good news is that it won’t always be this hard. While I’ll always need to avoid mold as much as possible, I should be able to live a pretty normal life. As my doctor says (she’s 7 years out now) she knows if she’s in a water damaged building that she’ll feel a little bad the next day, but that’s it. Some medications I may need for life but otherwise I’ll be able to hike and run and have my energy and endurance back…something I’ll never take for granted again. Plus, my doctor travels a lot which is something I hope to be able to do in the future.
Technically I’m doing much better than lots of folks at this stage and I attribute that to being proactive, the energy work I’ve done, meditation & prayer, following a pretty strict diet for years and the treatments I had pursued that helped to strengthen my immune system and body overall. Of course, all this is secondary to the amazing support I’ve received from my wonderful husband Tod and dogs, my family and friends…and the grace of the Divine.
Losing Everything to Gain Everything
So…to put it succinctly…we are starting over totally from scratch after all hell broke loose. By that I mean all we’ve kept from the old life are our wedding rings. Our friends are holding a few photo albums and paintings too in the hope that someday I’ll be able to tolerate them.
On the one hand, living in a small house on wheels with limited belongings is a dream come true for me. I get to live a simple life in alignment with my values. I hope that 3 years from now I’ll be well enough to feel this way most of the time. On the other hand, right now it’s hard to forget that it is a tiny refuge from a hostile world that seems to make me ill no matter which way I turn.
This weekend was the auction to sell our belongings. This marks the true end and beginning, a place of no turning back. There is a sense of relief around finally having completed this step and committing fully to the process of healing.
I sometimes have thoughts that maybe I am making this up and I should just go back in the house and it will all be better. It takes Tod to remind me of what happens when I get “hit”, as we call it. It is all so unreal, like a bad movie that you’re caught in the middle of, just doing your best to put one foot in front of the other.
I have experienced trauma before – from the death of my late husband Kevin to the dysentery ward of a remote Guatemalan hospital – but nothing like this. We joke sometimes that we’d be better off if our house had burned in a fire – our insurance would cover it and we could live anywhere. This is a fire that takes everything with no insurance and no safe place to rebuild.
So we have good days – when I can hike 3 or 4 miles and feel pretty good – and bad days, where I’m in lots of pain, fatigued and struggle to get out of bed. It’s frustrating because I still get blindsided by places or items I thought would be safe. The good news is the bad days are not as frequent as they used to be and my energy levels are much better than before. And of course, just like the stubborn tenacity that made me keep looking for the real reason I was ill, I am equally determined to get better. Now that I know what is really wrong, I will never give up healing.
At one of the darkest times in this journey, I received an email from Andrea, the website author who has become an inspiration to us, about what to do with our house and belongings. She sent me this quote that has nourished me and given me courage in the face of this complex, confusing and mysterious illness.
In Japan they have stone markers placed throughout the villages by their ancestors with important reminders about life. One reads:“Always be prepared for unexpected tsunamis. Choose life over your possessions and valuables.’’
In this world where we have so much stuff that we grow accustomed to and are comforted by, it’s a shock to walk away from it. But ultimately when the tsunami comes, in whatever form, we have a choice.
And I choose LIFE.