Fellowship of the Suffering

The following are excerpts of e-mails and comments I have received over these last few months. Environmental illness touches people of all ages from all walks of life. I am convinced that while this illness is quite different from the swine flu, it is an epidemic in our country. I am grateful for the friendships I have formed and can't say enough about the encouragement and help I have received from these fellow strugglers.

"My two children (at present, 20 and 18) and I are still very sick. The three of us each have major mold problems."

"It's like unraveling a medical mystery story - only we wish we could just read the end to find out the solutions. A reminder to myself that God knows the ending, and he will guide us in the paths of health and healing.

"I have been diagnosed with Aspergillus Flavus - end stage along with both of my sons. My youngest has collapsing lungs due to toxic mold and we are currently living in a hotel."

"I hope one day to search medical website message boards for people with unexplained symptoms and suggest to them they explore the possibility of mold in their environment. For example, their post says they have an unexplained chronic cough, etc. This was one of my first MAJOR symptoms."

"We got our full report back and although it's not horrible, I have decided that I need to leave as soon as I can, and hopefully get on the road to recovery as fast as possible. I have decided that the only thing I will bring with me are the clothes on my back, and once I shower, I will get rid of those. "

"We have decided to go completely organic and chemical free. Our daughter's rashes have gone away."

"I have taken the kids to my parent's house again, but like I said, we have brought too many things here in the past weeks and months to have this be safe. I figure that the air here is at least a little better. My baby is very sick. He had been doing slightly better while we were at my parent's before and I was feeding him a hypoallergenic diet, but then we went back to the house for a few nights, and yesterday, he had 8 dirty diapers. He is starving before my eyes."

"Summer 2006 was when I got a super-bad sinus infection...had to have a CT scan, heavy-duty antibiotics and meds, etc. Somewhere along the way I found out from the tenant in the other duplex (it was a side-by-side duplex) that there was a leak in the roof of that duplex. The bedroom that had the leak adjoined with our main living area. The tenant told me that there was actually water running down the wall, getting his things wet in that room, etc. The landlord was aware of the leak for quite some time and seemed to monitor it. In spring 2007, as I remember, he had the roof fixed. In April 2007 was when my symptoms hit like a ton of bricks and very suddenly--bad chest pains, worst headaches I'd had in my life, severe anxiety and panic attacks, irritability, etc.etc. By that summer I was really sick and had the crushing fatigue. The dr was scratching his head, trying to figure out what was wrong."

Marc has been struggling for 13 years. Since High School. "I had been to the west coast for brain scans, all the way to the east coast. I have had every blood, urine, stool test known to man, along with being on every drug known to man. All of my tests came back normal leading people to believe that I was just crazy and it was all in my head. Until I went to a chiropractor a year ago who was testing for bio-toxins because he heard of dr shoemaker's work. Found out my c4a was sky high and they told me I had a problem with mold. I was like, "What?" I had never even heard of it before, and I had been studying obscure medical illnesses for 12 years trying to get myself better."

"I can't tell you how many times I have been in the pits of despair, in a near psychotic state, or in some other emotionally unstable moment where my brain is not only unreliable, but down-right scary. This is a pretty big swing for a guy that used to be known as "patient and level-headed." You can read Tom's story at Caring Bridge

Finally, there's Melanie. A mom in Virginia with two sick boys, one of whom (like Reagan) lost his ability to walk. Because of Melanie's help we connected Lyme's with our daughter Megan's struggle.

"Easter tomorrow - a good day for resurrection out of Coleman's bed. I got out of the house for a few hours today and when I came home, Coleman was walking around the den without a walker!!" You can read Melanie's story at Our Fight with Toxic Mold Illness

A Charles Dickens Day

"It was the best of times, it was the worst of times... it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us."

It was a rough day yesterday. Too rough to share on the blog. But the purpose of the blog is to help those going through a similar valley. To let them know they are not alone. So I will tell you that I burst into tears with most of my children watching and sobbed, "I want my life back."

Chris took 4 of the kids back to Colorado over the weekend to see my son's final High School drama. It killed me to stay behind. But I knew I belonged with the other children.

Those who did go were reminded of all that they lost. They visited our house and jumped on the trampolines in the back yard. They peered in the kitchen window and saw Kaitlyn's lunchbox and Brandon's homework. Just the way we left it October 4th. Kaitlyn was sure she saw our dog's reflection in the window.

You can imagine what it was like to come back to Arizona. Back to the desert. Back to air mattresses. Not an easy thing for a child. Or their mother.

So, yesterday was rough. Not only because of their broken hearts but because they were sick. They came back with headaches, dizziness, rashes, sore throats, and sinus congestion. There were bloody noses on the trip. From Clorox in a bathroom. All reminders of why we're here.

With all the sicknesses it was impossible to get back on track. We don't have much of a track yet but there has been some semblance of a routine. And yesterday it was lost. I couldn't keep up. I began to imagine what it was like to drop them off at school and go for a walk. To visit with friends at the coffee shop. To sleep on a bed again. To have a home. To be the mom I once was.

Chris got the troops back on track. And talked me through it. And helped me get off the floor. And then Ryan got here after his 12-hour drive. There was something about his arrival that renewed all of our spirits. There was laughter at the dinner table. And guitars pulled out. And singing.

We went for a walk out back and visited with our neighbors. Ryan was on his skateboard and the younger kids on their scooters. They were racing. And laughing. And the sun was setting.
And it was beautiful.

Food Intolerances

Several of my children developed food intolerances and/or allergies during the height of our mold exposure. Our oldest daughter Erin showed signs of a nut allergy before moving to our home in Colorado. The allergy became life threatening within months after we moved. Now that I know that peanuts are one of the top food carriers of aflatoxins all of us stay away from peanuts. We use almond butter instead.

It is common for those with biotoxin illness to develop an intolerance to gluten. Gliadin is the 18-amino acid protein found in gluten. It normally passes through the intestines just fine. Not necessarily so for those exposed to mold. When the gliadin is absorbed into the system, antibodies are made to fight off the invasion. This leads to inflammation. A typical gliadin antibody level is under 11. Kaitlyn's most recent blood test showed a level of 42. At the height of our exposure Colin's level was 105. Soon after we left our home it dropped to 31. We have not measured it since beginning the de-tox protocol.

(The gastro-intestinal specialist who first saw Colin attributed his abdominal pain to stress. He didn't mention the high gliadin level. I asked for the lab results much later and noticed the 105 reading.)

Because of the implications of gliadin leakage all of us are following a gluten-free diet. It has helped Colin tremendously. All of us feel better on it.

One of the best articles I have read on intestinal issues related to mold exposure is found on the mold-survivor website.

Leaky Gut Syndrome Article

Where are the stitches?

Our 9-year-old son Colin cut himself with scissors last week. He was working on a duct tape project. He has a cowboy hat covered with black duct tape. We went to the ER and while a cut is more complicated with a diabetic (his blood sugar dropped dramatically), we made it out with three stitches.

His cut healed in 7 days. We could see the progress on a daily basis. It healed before our very eyes.

It's the opposite with biotoxin illness. It's all invisible. The organisms that create the havoc are microscopic. They invade our systems while we are unaware. We have no knowledge of their life-threatening activity until we experience symptoms. Even then the symptoms are dismissed or ignored. No blood oozing everywhere to take us to the ER.

There are no stitches for the recovery either. This is a devastating reality. No quick fix. I want a doctor to stitch us up and be done with it. I'd like to return to normal life. I don't want to do any more research. I'm tired of making decisions.

My fatigue brings me back to the simple thought that has carried me this far. I will not give up.

In the words of Thomas Paine:
"The harder the conflict, the more glorious the triumph."

Toxic Exposure and Brain Injury

The first time our biofeedback psychologist examined us, I was surprised to learn how normal our symptoms are. Anxiety, fits of rage, depression, memory loss, attention disorders. All normal.

He has seen hundreds of mold-exposed patients since the early '90s and when he described what poison does to the brain my jaw fell. Literally. "The symptoms for mold exposure are so wide-ranging they don't fit into the 'box' established by doctors," he said. "So you become the problem."

He also said that his mold-exposed patients are the most traumatized group of people he's ever treated.

Toxins get right to the frontal part of the brain. This means an attack of the executive function. The conductor of the orchestra disappears. Multi-tasking becomes difficult. Anxiety increases.

I saw this on my daughter Shannon's brain map. High frequency brain waves were dominant. Both with her eyes closed as well as open. Hyper-reactive brain means increased anxiety. Across the board, I have seen this with my children. Afraid of things they weren't afraid of before, nervous about school, increased dependence on me. Looking back, this was a big clue to something happening environmentally.

An irritable cortex can also explain why someone may have difficulty falling asleep following a toxic exposure. If the high frequencies dominate it becomes difficult for the brain to transition to the calmer alpha rhythms needed for sleep. (Production of melatonin is also slowed which causes sleep disturbance.)

Our son Brandon has shown signs of attention deficit disorder. The mycotoxins actually create noise in the brain. Pretty distracting to a child.

The bottom line is toxic exposure makes your brain look like it took a hit. Trauma without the fall.

"You've basically been hit by a house," he said.

The pieces of the puzzle of our lives continue to fall into place.

VCS Testing

One of the commonalities my children experienced during the height of our mold exposure involved disruptions in vision. Blurry vision and double vision were repeated issues. Two of the children were prescribed reading glasses and our daughter Kaitlyn was referred to a vision therapist for convergence insufficiency. Soon after I began researching the connection between mold and health I came across Dr. Ritchie Shoemaker's website for biotoxin illness. This website features a vision screening that can determine the likelihood of a toxic exposure. The visual contrast test (VCS) tests the nerves that run from the eye to the back of the head. Those harmed by biotoxins will lose their ability to detect the subtle differences between white, grey, and black. The test is affordable and can be done at home. The link and instructions are available below.

Biotoxin Illness and VCS Testing

I paid for one VCS test for Colin and since we had unreliable internet at the time I couldn't follow through with it. We ended up leaving for Arizona and I never went back to it. If anyone has experience with this testing feel free to leave a comment and I will publish it.


Our current rental home is in the middle of nowhere. We are in a block of 4 homes but otherwise we have desert in front of us and behind us. The home next to us is vacant, in fact. We were unprepared, therefore, when pesticides and herbicides were sprayed on both sides of us last week. If you've followed our story you know we are chemically sensitive due to our massive mold exposure. We had an immediate reaction. Bloody noses, puffy eyes, and issues with breathing. We closed up the house for a day and have ordered a highly recommended air purifier. I've come to see our chemical sensitivity as a gift. It is protecting us.

The homeowners were simply following a commonly accepted protocol for home maintenance. I truly believe we are on the threshold of a major shift in our country. In an effort to be part of the education needed to promote change, I would like to share a lecture that is circulating among those who know they are environmentally ill. Dr. Hayes talks about the estrogen disturbances caused by pesticides. The mycotoxins produced by mold are estrogen mimickers as well. We have seen this in our family in the form of halted menstrual cycles, excessive menstrual bleeding, endometriosis, as well as gynecomastia.

This is one hour in length but well worth every moment. This is difficult information but, as I have learned, it's pain that leads to healthy change.

Lecture by Dr. Tyrone Hayes, Professor of Integrative Biology, University of California-Berkeley


I used to watch news stories involving courtrooms and wonder about the plaintiffs. I watched them descend the building stairs surrounded by cameras and eager reporters.

I wondered about the verdict and their emotions and always said a little prayer thanking God it wasn't me.

Yesterday I experienced something that connected me with the people I've watched from a distance. Chris and I had a telephone hearing with a panel of doctors and insurance representatives to plead our case. We have found medical help for our mold exposure outside of our "network." We would like our carrier's support. The difference between us and other "victims" is that no one has lost their life as of yet and no one tried to hurt us. Ever. Even the doctors who suggested psychological evaluation weren't trying to hurt us. They simply didn't know.

Still, recounting our story was painful. Far more painful than I expected. Our goal was to be non-emotional. Present the facts. It went fine until I talked about Reagan and his suffering. I still can't talk about those late nights. And after I finished, there was silence. We were done. We had presented our case in 13 minutes. We were alloted 15.

I thought I would feel different. Relieved. Hopeful. I expected a catharsis.

I felt none of that. Only sadness and sorrow.

Now I understand. It's painful reliving the past. That's what the victims on television alway say. It's not the verdict. It's the pain.

Now I understand why we suffer and go through hard times. It's to connect us with others. Even from a distance.

Mold Invader

This is an excerpt of a poem published in the book Mold Warriors. The author is Pam Carson. It aptly describes the devastating impact of mold illness.

Body alarm sounds
sending helmet headaches
as the nightmare begins.
Eyes plagued by visual disturbances
and light sensitivity.
Vanishing memory, skill gaps come and go.

Paralyzing depression
unrealistically framing life as hopeless.
Speech slurs and slip-ups
Disobedient words pass lips
Sent forth on a mission
never reach their destination
fall on ears as distorted clones.

Disaster descends to weeping nose scabs,
a throat on fire, infected sinuses
to congested lungs.
First soprano solo voice has been taken away,
laryngitis its shadow.

Chills replace drenching sweats.
It's not menopause.

Dizziness; weakened, numb, tingling limbs
crippled by airborne assailants,
lose their flexibility
guarantee stairs an agony.

Joints that ache and burn
The limp - the harbinger
of legs that eventually won't work at all.
Legs at night
Unwillingly house traveling electric maggots.

Skin that hurts to touch
becomes reddened and raw
sports rashes that ooze sticky brown

Recipient of patronizing explanations
for phantom symptoms evading
diagnosis and treatment.

Ordinary tasks become Olympic events
as gripping lids, brushes and pencils
becomes a formidable mountain.

Puzzling indifference of coworkers and friends
who bear same symptoms,

Crushing emotional pain to hear:
"There is nothing wrong with you!"
"You don't look sick."

Golden Birthday

Reagan turned 13 yesterday. It's hard to believe it's been two years since he invited his fifth grade class to his party. We divided them into groups and they each made their own movie.

At the time he turned 11 he had been diagnosed with an unexplained hearing loss. A conductive hearing loss. I had just taken him for a skin biopsy on a rash that appeared on his elbow. He was showing heightened anxiety at school. Knowing all that I know now I would think about water damage and air testing. But I accepted the mystery and thought nothing more about it.

A month after his 11th birthday we uncovered the mold. And our nightmare began.

Reagan's journey is particularly difficult. It began with a phone call from school on September 11th. Four months after the exposure. "My ear is ringing," he said. Three weeks later he begged to come home from school because the ringing was severe. The ringing took over his life until November 1st. That was the day the vertigo took over. Within 3 days he was vomiting all night. Soon he lost his ability to walk. We agreed to several surgeries hoping to end the unrelenting vertigo.

By Christmas it was clear our strategy had failed. He was walking again but perpetually dizzy. Reagan's question went from "will I be better by Christmas?" to "will I ever get better?" An agonizing question for a mother when she doesn't know how to answer.

He played video games to get through. At 2:00 a.m. I would hold him in a certain way. Stroke his head in just the right spot. Enough for him to finally fall asleep. Gradually I learned to sleep a couple of hours before he needed me. I hated to leave him alone. Even for a minute. But other children were sick. And I needed the strength.

On the morning of February 29th (it was leap year last year) he woke me up at 2:00 a.m. Just like always. He told me he was thinking of writing himself a letter.

"What would it say?" I asked him.

He spoke quietly. I almost missed it.

"Dear Reagan,

This had to happen to somebody. And you're the best one for it."

Yesterday was his golden birthday. He's much taller than he was. His voice has changed.
And he is wise beyond his years.

New Life

Our 11-year-old daughter Kaitlyn shared a big thought the other night. It just so happened to be 4 days before Easter.

"I picture our family as a rose. With one last petal left to die.
After that.....we'll be a new flower."

Immediately I went back to the quote from the March 24th post.
"A new life requires a death of some kind. Otherwise it is nothing new."

Death is agonizing. Emotionally, spiritually, physically.
The promise of the Resurrection remains. New Life.

Haunting Memory

My husband Chris woke up at 2:30 Wednesday morning with a memory.

Six months after we moved into our home in 2000 our 6-year-old daughter Kristen had a seizure. This is a vivid memory for both of us. A seizure is a terrifying sight. We often talk about that night and think of our fear, her inability to remember her name or any of her siblings after she came out of the seizure, and the place we found her. Until two nights ago we didn't think about her eyes and where they were focused.

If you happened to read Sunday's post you know about Colin's closet/room. It was located just off the boys' bedroom. Down the hall from Kristen's room which she shared with her younger sister Kaitlyn. We kept a baby monitor in Colin's room. Nice and loud. We could hear him breathing. Every parent rests easier with that sound. Sometime after midnight (who knows maybe 2:30 a.m.) Chris heard a disturbing sound in the monitor. He ran downstairs and found Kristen in Colin's tiny room. Huddled in the corner. Staring straight at the ceiling just outside of his room. She was staring straight at a spot in the ceiling. The precise spot we would drill to find toxic mold 8 years later.

Mycotoxin Study

This is a new study just released. It is quite lengthy and only those with a keen interest in the subject will want to wade through it. Basically it lends credence to the reality that mycotoxins can be found in humans. RealTime Labs is the lab we used to test for aflatoxins and is a constant reminder to me why we are following the de-tox protocol.

Mycotoxin study

Mold and Type 1 Diabetes

No doctor has told me that our mold exposure caused Colin's juvenile diabetes onset in June of 2007. I can't prove that it did. But there's no doubt in my mind. When we moved into our dream home in June of 2000 Colin was 6 months old. In light of the 7 older siblings who needed bedrooms Colin drew the short straw. We converted a large closet into a "Blue's Clue's" room. The closet was directly below the master bedroom shower where we would discover stachybotrys 8 years later. With the knowledge I have now I would never put a baby in an unventilated room. This is the reason I suggest opening windows whenever possible. Air circulation is critical. Within months after our move, Colin developed swollen adenoids. The pediatrician was undaunted by this and recommended surgery at age 8 if they were still swollen. I now know that swollen adenoids indicate a stress on the glands due to bacteria, virus, or fungi.

In May of 2007 we uncovered mold in the downstairs bathroom (located below Colin's original room). You will read this in "our story" which is located in the helpful links section of this blog. The mold was improperly remediated and all of us were exposed to high levels of toxic black mold. On June 24th (7 weeks after the exposure) my oldest daughter took Colin to a movie. She said he had to go to the bathroom numerous times. On June 25th we took Colin to a sporting event in Denver. We had to pull off the Interstate to let him go to the bathroom and then take him numerous times once we arrived. I was sure it was a bladder infection. He looked thin but he was a growing boy. The next day I took him to the doctor expecting a prescription for an antibiotic. We ended up in the emergency room.

Colin does amazingly well with his new life. Five shots a day and multiple finger pokes have somehow become routine. It's the other issues like numbness, migraines, rashes, and severe abdominal pain that get him down. These are slowly getting better. His pancreas won't get better. I hope for a cure one day. Perhaps his story will help others.

De-toxing the Home

I used to roll my eyes at the thought of ridding my home of toxins. My neighbor gave me her detergents and I happily took them. It is with great humility that I confess 6 years later that there are no chemicals in my home. At least chemicals I can control. Who knows about the glue in the cabinets.

Honestly, it was the easiest part of our journey. I love the natural shampoos, soaps, deodorants, and toothpastes. Two products I will never be without: charcoal soap from Collective Well Being. And bentonite clay from The Living Clay Company. Both are great for de-toxing the skin. Again, we're all exposed and this is a great way to help pull the toxins out. As for cleaning, white vinegar works virtually everywhere. You can even add lime for fragrance. The Bon Ami works great too. This is one area where you actually save money. Vinegar is dirt cheap! I also love hydrogen peroxide. It too is cheap and can be used for mouthwash (I buy food grade on the Internet), laundry, astringent, cleaning and more. Let me add that hydrogen peroxide is the only thing that seems to whiten the clothes (though not as well as bleach). I put in 1/2 cup or so of 3% in the bleach section of the washer. You can make your own 3% with the food grade peroxide and distilled water. Or you can use the $1.00 bottle from the grocery store.

When we first got to this house, I snuck in a toilet cleaner wand. Seemed so innocent. In the process of cleaning it brushed against my hand and I got two huge welts. This was a month ago and the marks are still there.

This is my understanding about toxins. Our bodies are made to handle them. We have inherent de-toxing capabilities. The problem comes in when our toxin load becomes too high. Our body lets us know in the form of auto-immune issues, allergies, etc. This is why I would take out the chemicals even if we hadn't had our exposure. There are so many toxic-free products...why not lighten our load?