Valuable Information

This is one of the best summaries of the dangers of toxic mold I have seen. It's less than 2 minutes long.

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We are moving today and Chris is joining us!

Musty smell and cross contamination

Two more stories have come my way this week. The first is a woman in Colorado who contacted me after seeing our story on the news. She left her rental home in the fall of 08. She began researching mold illness soon after she became sick and determined the consistent "musty" smell in the house must be mold. She knew to leave everything behind, moved to a townhome, and quickly began the quest for medical help. She has purchased her own air sampler from Environmental Monitoring Systems. She will now be able to monitor air quality in future home and work environments.
When I talked with her this week she emphasized the strong smell that was her first clue to the presence of toxic mold in the home.
The second story involves a woman who re-located to St. Thomas, Virgin Islands in 2006 for a 6 week work project. Within the first 3 weeks of arriving she found herself in the Emergency Room two times. When a co-worker came to see her in her residence he saw mold and told her to leave immediately. She packed up her belongings and moved to a different rental. Her husband and 6 year-old daughter soon joined her and within days her daughter became ill. The 3 of them went back to Alaska where the illnesses continued. Her clothing had cross-contaminated her home in Ketchikan Alaska. At this point she was unable to work, had 5 undiagnosed mini-strokes due to vascular inflammation, and both she and her daughter had MCS (multiple chemical sensitivity). They both became ill every time a cruise ship passed by. She sought medical help and within months had re-located to Benson Arizona. We talked this week and shared our stories. "Four months ago I could not have had this conversation with you", she said. "My brain wouldn't function this late in the day".
Both of these women are recovering. Not as quickly as either would like. But their determination has been an inspiration.

Short term memory loss

I have said little about the impact of the toxic mold exposure on my life. By necessity the focus of my life this last 19 months has been my children. I have been increasingly aware, however, that something is amiss with me. The pulmonary and neurological testing in December confirmed my suspicions. Further blood testing has also revealed abnormalities. By sharing a bit of my story I hope others will find help and hope.
These are the symptoms I have experienced: Chronic fatigue, ringing of the ears (tinnitus),disrupted sleep patterns, rashes, black tongue, emotional outbursts (to the point where my 10 year-old sobbed, "I want my old mommy back!"), joint pain, and general malaise.
I have read numerous times about something called brain fog. We have been on aggressive treatment for exactly a month and today I felt a level of clarity I have not felt for a very long time. Honestly, the inside of my head felt lighter. My pulmonary tests showed decreased lung capacity. I exercise so rarely I hadn't noticed the shortness of breath that comes with this. I did notice the decreased appetite that led to my weight loss in the last year. Mycotoxins play with leptin levels and several of us have high or low leptin levels.
By far my most debilitating symptom has been short-term memory loss and the resulting inability to multi-task. This is a very common symptom and easily dismissed as stress or age related. Let me immediately put the age issue to rest. My 19 year-old daughter has the same symptom and it showed up in her testing. I began to notice last year when I mixed up a number of appointments and missed some key events for my children. Uncharacteristic but understandable in light of the stress we were under. I could never find my cell phone or my glasses. I was having a much harder time in the kitchen. I would start something, leave it, and forget it. I had a hard time with my son's insulin doses. One time I gave him our dog's insulin by mistake. (It turned out fine. Just a humbling phone call to make to the doctor.) My kids couldn't depend on me to remember things they needed. I found myself saying, "Write it on the board or I won't remember." I started to forget where my car was parked. I couldn't find my keys. I couldn't remember what I needed at the store. This all was exacerbated when we re-located to Tucson. Parking lots are far more daunting without the familiar spots. Directions are very very difficult. I have to write them out in large print to read while I'm driving. I don't remember things I have told people. Numerous friends and family members have said to me, "You told me that already." It is indeed a disability and undoubtedly a result of mycotoxins at work in the brain. I have had two doctors assure me this is reversible and so I remain hopeful. Until then I am finding ways to adjust.
The other day my daughter gently "encouraged" me to buy a cell phone holster. I have thanked her numerous times because I haven't lost my phone one time. I keep a notebook with me and index cards nearby. I did miss an orthodonist appointment this morning for Colin. I wrote it down. I just couldn't find the paper.

Genetics

I wish I had paid more attention in High School. Biology has suddenly become so relevant. Here's a layperson's explanation of the genetics involved with mold exposure. A response to toxic mold has nothing to do with allergies. People aren't "allergic" to cyanide or yellow rain. All people will get sick when they are poisoned. Toxic mold is a poison. This is why a first step in dealing with toxic mold is leaving the environment followed by cleaning the environment. Aspergillus and penicillium can be cleaned. Stachybotrys is far more difficult to eradicate.
The question then becomes, "how well can my system clear itself of the poison"?
This is where genetics comes in. The person with the genetic pattern 4353 will have the most difficult time clearing the toxins. (There are other multisusceptible patterns as well). There are those with the 17252A pattern that will have a tough time clearing mold specifically. The good news is most people do not have these patterns. Upon removing themselves from a poisonous environment, they will improve. The bad news, for our family, is that we have the genetic make-up that will make this healing process very difficult. I have a double 4353. This means that each of my children received the 4353. Chris has at least one 17252A. Chris has not been tested. We know this because so many of the kids are showing up 4353 and 17252A. All of this answers the question that haunted me after we vacated our home in October. "Why aren't we getting better"?. There were some initial improvements but many symptoms remained 2 months later. At that point, I still had no doctor who knew and understood the connection between these symptoms and the mold exposure. It was difficult to maintain any semblance of sanity or hope. These test results help me look back with clarity and look ahead with hope.

And yet another

We took the boys to Great Clips today for buzz haircuts. If it's "boot camp" we're doing, why not include the haircuts? I watched as Colin talked to his stylist about his experience with mold. She had alot of questions for him. I was shocked at his vocabulary and extensive knowledge. "We have re-located to Arizona for de-toxing",he explained. "We had 300,000 spores of stachybotrys", he continued. "We take cholestyramine" "I got diabetes because of it". Pause. "Type 1"."Our builder stapled the shower pan liner instead of gluing it." He loved talking and she loved listening. Her interest stemmed from an experience she had in the early 90s. This I learned as we checked out. She lived in a University setting and a number of people were sick from the mold. She had a lengthy bout with pneumonia, developed candida, and suffered for many years after. The building was eventually demolished and a number of people sued and were awarded settlements. I stood there in amazement. And wondered. If there are this many stories in our small corner of the world, how does this remain such a hidden health hazard?

Stories

I remember in the weeks following Colin's diagnosis with type 1 diabetes I heard of numerous people with friends or relatives with the same disease. Suddenly,diabetes was everywhere I turned. It's the same thing with mold. In the weeks we've been in the Tucson area I have encountered numerous people with stories of their own. My daughter Megan needed dental work. She told the dentist her story of mold exposure. "Interesting", he said."We had mold remediation done several months ago and ever since my wife hasn't been the same." Mood changes and concentration issues have surfaced. He didn't know about the mold specialist in Benson. I talked with a woman whose daughter is in medical school in the Caribbean. We were considering this woman's rental home. I asked about water damage in the home and she seemed unusually interested and aware. She explained that her 24 year-old daughter lived in a brand new "super" dorm this last semester.
The daughter got quite sick and noticed mold under the cracks in her walls. Numerous students complained of illness as well. In this case, construction continued too soon after a heavy rain. I talked with a nurse in Dr. Gray's office who explained what happens to her when a mold patient comes in with contaminated clothing. She starts coughing immediately. She said she has to leave the room usually because she is so short of breath. One of the assistants in the office breaks out in rashes just from handling the paperwork. I talked with a property owner in Sierra Vista who had dozens of rentals remediated last year for toxic mold. It's quite sobering to realize the extent to which mold is an issue in our country. In large part because we have no mold standards. But that is worthy of a different discussion.

Aflatoxin Test Results

All 11 of us have now tested positive for aflatoxins. When you understand the nature of these mycotoxins and their capacity to do harm this could be alarming news. But, as one who has searched for answers for months on end, this news comes as a relief.
No more wondering which child to treat. No more wondering about Chris or myself. I recommend this test (which is a urine test) wholeheartedly to someone concerned about mold exposure and their family. Aflatoxin is the mycotoxin that comes from aspergillus. Ochratoxin comes from penicillium and tricothecene comes from stachybotrys. It's best to run the complete mycotoxin panel. The tests are available through Real Time Labs and require a doctor's order. They are costly but often reimbursed by insurance.
A couple of other notes about aflatoxins.The World Health Organization acknowledges these toxins to be carcinogenic. Aflatoxins can be found in peanuts and grains. To some degree we are all exposed on a daily basis. Our bodies generally will handle trace amounts. It's the high levels that occur in a water-damaged indoor environment and/or in foods that must be addressed.

Watching the parade in Benson

My 19 year-old daughter and I watched Barak Obama take the oath of office today. We were in a doctor's waiting room.It doesn't take a particular political view to know that President Obama is part of a bigger story. A story that began 43 presidents ago. A story whose ending has yet to be revealed. A doctor's office in Benson Arizona seemed so tiny in comparison. Sick children seemed miniscule in light of all that is happening in Washington D.C. Still, I know that our story is part of something bigger. Our family's next chapter has begun. I don't know the ending. All I know is that I'm not writing it. Because I sure wouldn't have written it this way. But there's more meaning in this one. That's all I need to know.

Flip Flops in the Desert

We are learning the hard way just how seriously one must take the power of the cactus. The first day we went on a walk my daughter had to pull several "spines" out of my leg. I found this to be excruciating and an excellent lesson. Apparently I didn't get the word out in time because the next day Reagan pulled one out by himself. Today our 14 year-old was taking pictures in our front yard when she tripped into a small cactus plant. She was wearing her reliable flip flops. Quickly she came in to show me the "splinter" in her big toe. I tried all of my splinter tricks. Clay, duct tape, and needle scraping. By nightfall it was clear that whatever was in her toe was not coming out without some outside intervention. By 8:00pm we found ourselves at the Oro Valley Urgent Care Center. I felt sure they would not be surprised to see another Coloradan with a cactus spine in their toe. I was right. The doctor numbed her toe and began the removal process. When the initial tweezer extraction failed he asked for a small scalpal.He commented on Kristen's calm demeanor. Before long he pulled out a small but wide "pine needle"...at least that's how I can best describe it. He asked why we were in Arizona. Just the question I was anticipating. I told him. The nurse stayed to listen. They were stunned. The aflatoxin test results always draw a response along with the abandonment of our home. "Extreme Home Makeover is coming to Tucson next week", she said. "I'm hoping to volunteer. If I actually get to help I'll be sure to mention your name." Super Bowl, Exteme Home Makeover, Spine extractions. Lots happening in Arizona these days.

The only way through it

Like the fungal colonies embedded in our skin, there's a quote from Jackson Browne embedded in my mind. While the singer/songwriter is certainly no theologian, the simplicity of the thought has provoked a great deal of comfort this last week. Especially yesterday. I missed my son's talent show Friday night. He did a dramatic interpretation of a scene from Dark Knight. I ached to see him perform. He's a senior in High School and everything this year is "his last". Amidst the pain, I knew with even greater assurance that we are in the best place we can be. We had an appointment Friday with a doctor that confirmed our decision even more and I will write more about that later. Still, this phase of our journey, though filled with answers, is long and arduous. It's relentless and it's lonely. I'd like it to be over or at least find a different, shorter way to get through. That's why Jackson Browne continues to pop into my mind. "The only way through it", he says, "is through it." There's no way around it. There's no way over it. Today I woke up and felt a bit lighter. Less overwhelmed. It's one day at a time. And there's no special protocol for 'getting through'. It's just that. Getting through. I think I can do that.

We get to rent houses

I signed a lease yesterday. It's the second one I've signed since we left our home October 4th. We're in a vacation rental now so that makes 3 homes in all. Chris is in Colorado cheering me on so he hasn't seen this new home. I must pick up the story from where I left off on my initial blog. A church in Tucson graciously offered us a home to live in rent-free for 6 months. I saw the home on December 17th and found it to be ridden with mold. There was no doubt when I looked at the baseboards, shower area, and behind the toilets. It was the offer of the home that started us thinking about temporary re-location to Arizona in the first place so when it didn't work out I was determined to continue trying. We lived in a hotel for a few nights and a few days before Christmas came upon this vacation rental. It has been ideal. (In fact, it is 10 minutes from a radio studio willing to let us record our Building Relationships program.)Originally, the owner could only offer us a week. Ultimately he offered it until the end of January. The search for an equally good fit felt hopeless at times. That is until we met a family with a large home looking to rent to someone with alot of kids. They offered to leave furniture. There is a guest house where Chris can set up his studio.The mold testing turned out clear. And there are copies of the Left Behind books in the living room. We signed a 2 month lease which may grow into a couple more months depending on our progress. This brings me to the title of this blog. Yesterday I asked the kids to write a paper describing the change in their lives from last year to this year. I hope you smile like I did as you read this excerpt of Colin's.

" My life is different this year because we don't have to remeidiate and have to deal with mold. And last year we didn't have to go to Arizona. And this year we don't have to deal with icy roads and snow. This year I get to swim alot and I mean alot even in rain. What's different about this year is we get to rent houses not keep them."

Homeowner's Lament

I miss our brown couch. It's an interesting thing to miss in light of everything else we left behind. But it was a beautiful couch. Microfiber. Comfortable. It was a sectional and included a chaise that everyone fought over. We bought it just before our 11 year-old became very sick.A month after we pieced it together I watched this same son bang his head against it for 2 hours because he had lost his ability to walk. He had been up numerous nights with vomiting and vertigo. "I want to go run and play", he kept crying (and kept banging). Even with that vivid,horrifying memory I miss the brown couch. As I've sorted through my feelings, I realize it's not the couch I miss. It's the fact that our whole family gathered on that couch. Our older children stopped by and sat on it. We watched movies together on it. We argued on it. It's one of our dysfunctional patterns. You could set your watch to it. We would sit in the living room on a Sunday afternoon and spend 2 hours deciding what to do. It would be 4:00 before we reached a decision and then it was too late to do anything. There are other things I miss about the house. The walls leading to the game room. They're filled with the kids' school pictures. I miss the sight of Erin's 1st grade picture. And Shannon's senior picture. And Megan's 2nd grade picture with her hair pulled back.I miss seeing our little neighbor Brandi at our front door. I miss the sound of the dogs running to the back door. I miss seeing Chris come around the corner from his office to the kitchen. But, it's sure not the stuff I miss. Not at all. It's just like I've always heard and it's true. It's just stuff. And home has nothing to do with stuff.
Home is about the unseen. The intangible. The immeasurable. It's about love and warmth and relationships. Thankfully, mold has no power over these. In the end it won't matter what happens to our home with the brown couch and pictures on the walls. Because this is all leading to something much bigger. I take heart, more than ever, in the reality that "what is seen is temporary,but what is unseen is eternal."

A Picture in the Dark

I took a picture of Colin last night. It was midnight and he was sleeping. If you were me you would have taken a picture too. Especially if it was your son. Colin was 6 months old when we moved to Colorado. Within a year he started sleeping with his mouth open. During an annual check-up the pediatrician mentioned that his adenoids were swollen. "If they're still swollen when he's 8 we'll get them removed," she said. I thought nothing more about it. Sounded fine to me. I never thought to ask why they were swollen.  In the blink of an eye Colin turned 8. It was last December. His birthday was 6 months after he was diagnosed with Type 1 diabetes. This momentous occasion came right in the middle of our horror story. His brother was in the hospital learning to walk again. His sister was complaining of  headaches and dizziness. Our lives were beginning to crumble. It took a few months to schedule his surgery as it was clear his adenoids remained swollen and breathing at night was labored. The day before surgery I cancelled. He was sick with diarrhea. I was relieved. His blood sugars had been erratic. His head was constantly throbbing and he was often doubled over with abdominal pain. Fast forward to November.  I scheduled the surgery again. This time with a little more intent and knowledge. Adenoids swell in response to a virus, bacteria, or fungus. There was no doubt about Colin's. The ENT dismissed me when I suggested the mold as the source but I gave her our timeline anyway. We scheduled his surgery for December 15th. I was looking for any relief for him of any kind and even though he was still quite sick I imagined him breathing at night through his nose. That picture kept me going. Two weeks before surgery I took Colin and Reagan to see Dr. Gray in Arizona. It was my first question. "He's scheduled for adenoid surgery. What do you think?", I asked. He paused for a moment. He had been checking his left ear. "Let's wait", he said. "If we don't see improvement in a few months we'll re-consider." Good enough for me. I was relieved. We came back to Monument for only a week and here we are 5 weeks later. We've been on the full treatment for a week now. I say full treatment because I had missed something important until 7 days ago. Guaifenesin. It's an expectorant. Colin's nose has been running constantly since I added it. I bought him his own box of tissues. "Don't sniff it back up," I kept repeating. I learned from our chiropractor how important it is to release the mucus when your body is de-toxing. This is the background for the picture. It was 11:30 last night. (I keep Colin close by me since his blood sugars often drop in the middle of the night.) Something sounded different. It was his breathing. I turned on a light and there it was. His mouth was closed. Just as I had imagined.

Tears of gratitude

I can't imagine a harder week than this last week. I'm glad tommorrow is the start of a new one.

Because of the holidays we were unable to replenish our supply of prescriptions. Last Monday morning I spent 2 1/2 hours on the phone talking with the suppliers. Our treatment protocol involves 5 different sources. We have a temporary address so it's a bit more complicated. Mistakes were made, shipments were late, insurance didn't come through, and addresses were wrong. In addition, I lost the use of both of my credit cards. (long story). Colin's test strips for his blood sugar meter went from 20 dollars to 120 dollars for the second time in a year. More phone calls. More decisions. New samples have to be mailed to the lab in Texas when I thought they had archived the previous ones. I sent in tests for a home we're considering renting and heard on Friday that I made a crucial mistake. I followed the directions carefully. It said nothing about clear tape instead of masking tape. It had taken hours to do. Friday morning I opened our new nebulizer. It felt like Christmas. It wouldn't work. I called the pharmacy. The customer service representative told me what I already knew. No refunds. It's possible to get a replacement but it will take a month. I knew this because the first one I bought didn't work and we're still waiting on that one. She asked me what I needed it for. I told her. She took the time to listen and ask questions and then she let me cry. She told me about her experience the night before. She was driving to a new doctor for chronic pain. She got lost. She went 30 miles out of her way before turning around. She was charged 500 dollars for the visit when she thought it would be 200 dollars. She said she cried all of the way home. "And so," she said, "I understand how you feel." I cried again. This time out of gratitude. 

Dietary Changes

In my previous life (before mold) I had a tendency to do things  "over the top".  I started running in my early 20s. Within 2 years I ran a marathon. I had my first child when I was 27. Within 16 years I had 9. We moved to our mansion home and I learned to decorate. It wasn't long before the closets were decorated.  While this obsessive quality has some serious downfalls I'm hoping to use it for good now. If we're here in Arizona to get better, I have reasoned, why not help by altering the way we eat too. This has been spurred on by my daughter Megan (21) who joined me in December on this quest for health.  She has experienced some severe effects from the mold and has determined to follow the anti-fungal diet recommended by Doug Kaufman of www.knowthecause.com.  It has also been spurred on by ths thought I read by Hippocrates: "Food is your medicine. Your medicine is your food." In summary, we have eliminated processed sugars and yeast. Fungus feeds on carbs and sugars and often leads to yeast overgrowth even in an uncontaminated environment.I have steadily been making changes over the last six months so the kids were prepared. I am not a purist in this area by any means. Megan is the one following the anti-fungal diet. But a lot has changed and the kids seem to be benefitting already. We have scrambled eggs most mornings. Pamela's gluten and wheat free pancakes are a big hit. We use a little blue agave sweetener or butter and cinammon. I keep apples, oranges, grapefruit, and bananas out and that's all they have in between meals. Broccoli is one of the healthiest food you can eat because it survives fungus. I am surprised how much easier it is to shop (because there's less choice) and how much less conflict we have at mealtime (because there is less choice).  I do have to shop every other day at least in order to keep things fresh but since this is all I'm doing right now it works.After dinner the fruit is still up for grabs and I keep Luna bars, Odwalla bars, Lara bars, Bora Bora bars on hand and that is what they have before bed. We also make popcorn on the stove.I don't know how this will translate into the "real world" but for now the simplicity of meat, fruit, and vegetables with minimal snacking has helped a great deal.

Treatment for biotoxin exposure

This is a general overview of the treatment protocol we are following. I will track it from morning to night. Breakfast:  we take Neural Sensitization Capsules which are formulated at Key Pharmacy in Kent Washington. There are 26 ingredients in each capsule ranging from selenium to zinc to grapeseed extract. We take 3 capsules with each meal. In addition, we take Vitamin E, Carlson's Fish oil (fish oil from the North Sea where fish are mercury free), thiocid, ToCoQ10,expectorant to keep the mucus "moving" out of the system, 2 nasal sprays, and hydroxy B12 with FA. Following breakfast we each take glutathoine with a nebulizer. This takes 20 minutes for each person. It takes 2 hours to get through everyone. I have purchased a new nebulizer but thus far have not been able to get it to work. (this would speed things along for us).

Two to three hours after breakfast we take 3 sequestering agents designed to pull the mycotoxins from our systems. These cannot be taken with the supplements as the nutrition would be pulled from the system as well. This part fascinates me because one of the agents is the drug cholestyramine which my pediatrician agreed to prescribe for me last summer. I was uncomfortable taking anything without the knowledgeable supervision of a specialist and I'm glad I waited. The other 2 agents are bentonite clay and charcoal and are key components as all 3 work together.

In mid-afternoon we take the NSPs again. Dinner we take them a third time along with some of the earlier supplements. Nasal Sprays are repeated and following dinner we do the whole nebulizing routine again. Before bed we do the sequestering agents 1 last time.

We also use ketoconazole shampoo and charcoal soap. We take clay baths as well. 

This protocol largely comes from Dr. Grace Ziem and was developed only in the last few years. 

The kids have been swimming every day in between treatments. It is a consuming routine to say the least and requires every bit of energy I have. But I think back to the first of December when I had nothing to offer them(and myself) and I am grateful.

Two notes of interest. Glutathione is used to treat autistic children and worth the research time for parents interested in pursuing further options.

Our favorite products include charcoal pore cleanse from Collective Well Being. (CollectiveWellbeing.com), All natural calcium bentonite clay from www. livingclay.com. You don't have to be sick to benefit from these products.We're all exposed to various toxins on a daily basis and the clay pulls the toxins right out of the skin. We have noticed tremendous improvement in our skin from both of these!!  The kids ask daily to take a clay bath because their skin feels so soft.

Mycotoxins

I plan to devote an entire post to the explanation of mycotoxins and their effect on the human body. But for today I thought I would share with you some new results.  A few days after we left our home we sent urine samples to RealTimeLabs in Texas for mycotoxin testing. Because of the expense we decided to only test for one of the toxins that come from mold exposure: tricothecenes. These came back negative a week later with only a trace for Reagan and Colin. I was elated.( These mycotoxins are the ones that come from stachybotrys). We were going to get off "easy" and all would be well.  Our samples were archived in the event we would ever want to test for the other 2 mycotoxins.  As the months wore on I could see all was not well. The kids were still sick. Upon the recommendation of Dr. Gray we had Colin and Reagan and one of our older daughters tested for aflatoxins and ochratoxins. This week I learned that all 3 children are positive for aflatoxins and 2 of them positive for ochratoxins. Their levels are high and alarming. Aflatoxins are known to be carcinogenic.

Colin's level of ochratoxin presence is 9 which is very very high. In talking with the doctor at the lab this morning, I learned that the tricothecenes may have not showed up in the urine because we were not being treated and they were "stuck" in their systems and not mobilized into the urine.  As I said, I will explain some of the specific damage these mycotoxins do but wanted to share this with you.

Leptin, Myelin, and an RV

We've had a few of our blood tests come back. These were done back in Colorado under the auspice of our family practice doctor. He talked with Dr. Gray and agreed to authorize them. So far most have come back abnormal. These include our leptin, c4a, and myelin antibodies. The myelin antibodies are of particular concern as some came out positive for myself, Kaitlyn, and Colin (that I know of so far).  The good news about this is that our family doctor in Monument called me specifically to express his concern and support for pursuing medical help in Arizona. He has drafted a letter which I will be able to use to hopefully get our insurance carrier to cover some of these medical expenses. Dr. Gray mentioned to me by phone the other day that one of my children showed a 4353 genetic pattern. He talked at length about receptor cells and susceptible patterns but the bottom line is that this particular child  ( he was driving and couldn't recall which child) would never get better without intervention. We have such a long road ahead but I'm grateful we're on it.

One other test result of interest. Chris' office in the garage of our home was found to be contaminated with aspergillus.  Like stachybotrys this is a toxic mold. Unlike stachybotrys it can be cleaned. So Chris is having his equipment cleaned and is planning on broadcasting his daily radio show from an RV in our driveway. He needs the special phone line that's in his office in order to broadcast so if you're in Monument and drive by our old home be sure to honk at the RV. 

Truth and Lies

I called Chris yesterday to tell him I couldn't do this alone. I was losing it here just as I was losing it there.I underestimated Colin's morning insulin dose and he went high. I assumed we could go for an afternoon walk and it backfired.

I had no emotional energy for Kaitlyn's need to vent her feelings. We had not missed a treatment in all of this but I had reached the end (yet again).  I wondered why I ever thought I could do this. I was ready (for the 100th time since leaving the house Oct 4th) to give up.  Chris knew exactly what I was saying.  This is the advantage of 26 years of marriage with 0ne of them filled with horrific challenges. You just know what the other is saying and feeling. He didn't try to fix it. He just empathized. I hung up the phone and felt a bit less of a burden. And then I determined in my heart to tell myself the truth. Here were the lies racing around my head:

1. You're a failure as a mother.

2. You should never have tried this.

3. You can't do this in Colorado or Arizona. You just can't do it.

4. The kids will never get better anyway.

It helped to put words to the lies. What can I tell myself that is true? 

1. You accomplished alot in one week.

2. You're in Arizona to help them. This is not forever, it's a season.

3.You're doing the best you can.

4. You're allowed to make mistakes.

5. Today was a bad day. I can learn something that will help tommorrow.

I went to sleep last night thinking more about what's true than what's not. When I woke up I did all the treatments for myself before they woke up. (I learned this from yesterday). 

I decided to stop feeling sorry for them and all of their losses and be a bit tougher. I decided to let this be hard.

And after the breakfast regimen which went much better today I opened an e-mail from Chris. He had thought alot about our situation. I know how torn he must feel as he tries to handle all of the logistics with his work situation,  help our daughter move, help another daughter deal with the upheaval of it all, etc. etc.He decided he didn't need to fix it at all. Instead he reminded me that one day I'll be at a bookstore by myself sipping soy (since I gave up coffee with this healing process).  He reminded me that one day "these dear ones will fly and we'll be left with each other and our mold issues."He reminded me that a month or two in Arizona will help them.  And he told me that without a doubt I can do this. It was everything I needed to hear.  And I'm grateful.

Timeline of Events

· June 2000 Chris, myself and our 8 children move from a small 1800-square-foot home in suburban Chicago to an expansive, relatively new 5500-square-foot home in Monument, Colorado. We choose Colorado for its beauty and close proximity to Chris’ writing colleagues.

· June 2001 through May 2007 Our 9th child, Brandon James, is born in June of 2001. We begin to see some medical issues arise. Our oldest daughter develops a severe nut allergy. Our 4th daughter is diagnosed with complex partial seizure disorder. Other issues arise in the family, such as mild hearing loss, heavy menstrual bleeding, rashes, nickel allergies, swollen adenoids, and a dog with type 1 diabetes. We make no association with our home.

· April 2007 Our 11-year-old son, Reagan, has skin biopsy for mysterious rash in the form of small bumps on his elbows and other joints. Dermatologist cannot diagnose the cause.

· May 9, 2007 (the day before Mother’s Day) In the process of preparing for carpets to be cleaned in our downstairs, I notice a brown spot in the corner of our oldest daughter's room. It is located directly behind a bathroom. After uncovering the spot and cutting into the wall we discover black mold. We learn much later that cutting into the wall caused the spores to be released, thereby putting the family at risk. We call a mold remediation team to diagnose and treat it. They do not wear masks and do not ventilate the contaminated air. They assure us there is no risk or danger. We believe them.

(14 months later I would read this: Remediators who are not wearing any face, mouth, hand, or body protection in the midst of visible mold or moldy odors are untrained and should be asked to leave. You will be hurt by their lack of training. From the book "Your Guide to Mold Toxins" by James Schaller, M.D. and Gary Rosen, Ph.D.)

· June 26, 2007 (7 weeks from the date of exposure) Our 7-year-old son, Colin, is diagnosed with Type 1 Juvenile Diabetes. Research suggests a "toxic trigger" for onset. Colin slept in a room with little to no ventilation, which could explain his predisposition to diabetes (with toxic fumes in the home). His adenoids became swollen soon after moving to Colorado. "Usually, enlargement of the gland indicates increased working of the gland, i.e. reaction towards the disease or infective agents (bacteria or viruses or fungi)." With no family history and little experience with medical issues, we are launched into a new world.

· July 2007 We learn from our insurance company that slow leaks and/or mold are not covered.

· September 11, 2007 Reagan calls from school to say his ear is ringing. I take him to a top neurotologist in Colorado Springs.

· October 1, 2007 Reagan’s ringing is debilitating. MRI and blood work scheduled.

· November 1, 2007 Reagan wakes up dizzy. A few days later he is up all night with vertigo and vomiting. His last day of 6th grade will prove to be October 31.

· November 6, 2007 We seek a second opinion at Children’s Hospital in Denver. Because of the severity of the vertigo attacks we are admitted to the Emergency Room. The senior neurologist determines there is nothing neurologically wrong. ENT doctors at the hospital are mystified.

· November 10, 2007 As the violent vertigo continues, the neurotologist gives the diagnosis of Meniere’s Disease and performs shunt surgery. Reagan recovers well and begins vestibular rehabilitation as walking has become labored and difficult.

· November 22, 2007 Vertigo returns with a vengeance. Phenergan and valium are prescribed. We are now carrying Reagan as his balance is clearly disturbed.

· November 28, 2007 Reagan is admitted to the hospital for an injection of gentamiacin with the hope of killing the 8th nerve on the left side. Following surgery he is admitted to the rehabilitation unit at Memorial Hospital, as he is only able to walk with the help of a walker. His balance is restored on day 7. He is perpetually dizzy and crying at night, the dizziness is so intense. The rehab people seem mystified that he is chronically dizzy. Rehab doctor assumes it must be psychological.

· December 7, 2007 Reagan comes home from the hospital. Vertigo comes back within days. Perpetually dizzy 24 hours a day. Awake until 2 a.m. most nights until exhaustion overtakes him. I have to hold him and sing to him until he finally falls asleep.

· December 21, 2007 Second gentamiacin injection. Outpatient surgery.

· December 22, 2007 Vertigo intensifies.

· December 25, 2007 Christmas. Reagan is terribly dizzy. Bangs his head against the couch to try to get rid of it. He’s trying to cope with the lack of progress.

· January 3, 2008 The neurotologist says Reagan needs tough love. I sense there is nothing more he can do.

· January 2008 Our son with diabetes (now 8 years old) continues to complain of headaches and blurred vision. Says he is seeing double. After ruling out complications from diabetes, glasses are prescribed.

· January 2008 I notice unusual rashes on our 6-year-old son, Brandon.

· January 2008 I call an environmental hygienist in Denver and talk with him at length about my children’s illnesses and the mold remediation in May. He does not believe the illnesses are related to last year’s exposure. He is aware only of respiratory illnesses related to mold. He says we would be wasting our money to have our air tested. He comments on the fact that the remediation team wore no masks. He calls it poor business practice and unprofessional.

· February 2008 Our 10-year-old daughter Kaitlyn continues to complain of headaches, double vision, and dizziness. She has difficulty riding in the car. The optometrist diagnoses her with convergence insufficiency and diplopia. I take her for 3 other opinions including an ophthalmologist, who concurs. All agree she needs vision therapy. We begin a home therapy program for Kaitlyn. She is clearly debilitated and asking to come home after just 3 hours of school.

· February 13, 2008 VNG testing for Reagan shows the left ear has recovered to almost normal caloric activity. This is amazing in light of the toxicity of the drug gentamiacin. Meniere’s Disease appears unlikely. Reagan’s hearing in the left ear returns to the level it was on Sept. 11th. Denver neurotologist introduces the idea of migraine. I feel a need to pursue another opinion as this is a brand new idea.

· March 3, 2008 Through an e-mail to the University of Michigan, the head of the vestibular department at the Mayo Clinic hears about Reagan and calls me. Tells us that we created a separate vestibular disorder with the gentamiacin and we are in truth dealing with vestibular migraine with some adult presentation. We begin periactin and watch for trigger foods and other common migraine issues including weather changes and light sensitivity. His vertigo begins to make sense. But we are still not linking any of this to the mold exposure in May.

· March 2008 Colin complains of abdominal pain. A stomach X-ray shows that something is clearly creating a disturbance in his intestine.

· March 2008 Kaitlyn worsens. We begin vision therapy in Denver in hopes that the convergence issue will resolve and her symptoms will dissipate.

· March 2008 Our 17-year-old son Ryan’s acne has become severe. He has had chronic cold/sinus congestion/sore throat since February.

· April 2008 Kaitlyn is unable to return to school. Her motion sickness and vertigo are escalating. We see a dramatic shift in her personality. She is negative and irritable. She lies on the floor many nights and says she wants to die. The vision therapist notices a major head tilt in Kaitlyn. Suggests that there may be more going on than the convergence issue. Advises us to see a chiropractor.

· April 2008 Colin complains of numbness in his right hand. He has significant rashes on both hands. The blurry vision and headaches continue. The abdominal pain continues. He cries at night, asking if he will feel like this forever since diabetes is forever. We see a gastrointestinal specialist. He suggests stress but agrees to do further testing. Colin leaves school early most days.

· April 2008 Our 6-year-old son, Brandon, complains of blurry vision and abdominal pain. His teacher sends home a note saying he appears to be urinating frequently. Brandon is diagnosed with dysfunctional voiding. Stomach X-ray shows he is constipated.

· April 2008 I become extremely fatigued. Develop ringing in both ears. I assume this is due to stress of these last 11 months. I also begin to notice some memory issues but dismiss it quickly.

· April 2008 A pediatric neurologist at Children’s Hospital in Denver skeptically prescribes topomax for Reagan’s migranious vertigo. With no family history of migraine he expresses disbelief that a child can be dizzy 24 hours a day. With the lack of support I decide to pursue alternative/natural care. Reagan is suffering with each weather change. Because of this and Kaitlyn’s head tilt, I consider a chiropractor with a head/neck specialty.

· April 25, 2008 I reach the point of desperation and despair. Chris is doing his best to continue to pay the mounting bills. 3 children are out of school completely and are not improving. I determine to see a chiropractor with the specialty of orthospinology. As I would come to learn, orthospinology focuses on the atlas bone and its intersection with the spinal column. Misalignment inhibits the brain from sending its messages to the body, creating neurological/immune system issues. One of the primary causes of misalignment is toxic exposure.

· May 10, 2008 (the day before Mother’s day) Colin notices discoloration in his ceiling. Unaware of the dangers of mold exposure, we cut into the floor area around the master bedroom shower area and notice a mold-like substance. Assuming there is no connection with our children's illnesses from the previous mold, we call the same remediation team. They begin work the same day.

· May 16, 2008 I become increasingly uncomfortable with the remediation process. The workmen still wear no masks. Black mold is visible in the room where we are sleeping. The owner of a second remediation company comes to review the work. He is shocked at the fan which is re-circulating contaminated air through the house. There is no ventilation and black mold is clearly exposed. We call the hygienist and schedule air sampling for the following Tuesday. We tell the remediation company to remove their equipment immediately. They assure us our air in the affected areas is the cleanest in the house. Once again we hear from the insurance company that mold and slow leaks are not covered.

· May 2008 Reagan is suffering massive nosebleeds each night.

· May 2008 Chris experiences numbness in his right hand and lower arm.

· May 21, 2008 Following atlas adjustment, Colin becomes feverish and gray in color. He begins vomiting. His fever climbs to 104 degrees. Visibly shaking. Diarrhea begins. This continues for the next 4 days. There is black substance with each bowel movement. By the 5th day his abdominal pain has subsided. The numbness is gone and his vision has improved.

· May 22, 2008 The hygienist calls with the results of our air samples. The lower level of the home has a reading of 120 mold spores. The count outside our house is 790. The count in the boys’ room is 293,000. 207,000 of these spores are stachybotrys. 86,000 of these spores are the type chaetomium. The count in our master bedroom is 321,987. 250,000 are stachybotrys. 71,000 are chaetomium. The hygienist indicates he has never seen counts this high in either residential or commercial structures. The mold in this area of the house is significantly less than the area downstairs which was improperly remediated last year. The magnitude of last year’s exposure has to be much greater.

· May 22, 2008 We call for an emergency remediation. The new remediation team recommended by the hygienist contains the affected areas and seals off the rooms by midnight. They are in full protective wear. We schedule carpet steam cleaning throughout the house, and vent disinfection for the next week. Our clothing, linens, and bedding are put in sealed bags and are later disposed of. Neither the hygienist nor the remediation team suggest vacating the house.

· June 2008 Brandon’s rashes diminish following the remediation. His frequent urination is improving. I learn that frequent urination can be a sign of a low MSH (Melanocyte Stimulating Hormone). Dr. James Schaller writes, "The most common cause of a very low MSH in my patients is exposure to biotoxins."

· July 2008 I begin extensive research on the subject of Toxic Black Mold Syndrome. I read this on the website Mold-Help.org:
"The most dangerous mold strains are: Chaetomium (pronounced Kay-toe-MEE-yum) and Stachybotrys chartarum (pronounced Stack-ee-BOT-ris Shar-TAR-um) as they have been proven to produce demylenating mycotoxins among others, meaning they can lead to autoimmune disease. Under certain growth and environmental conditions, both of these fungi release toxic, microscopic spores and several types of mycotoxins that can cause the worst symptoms which are usually irreversible such as neurological and immunological damage."

· July 2008 We continue taking de-toxifying supplements. I read about the prescription medication Cholestyramine which has been proven to successfully bind biotoxins. I consider blood testing as outlined in "Your Guide to Mold Toxins." But with the children improving, I decide to wait.

· August 14, 2008 The children return to school. 2 of the children become sick the first week with cold symptoms. This is disturbing but I assume it is their compromised immune systems.

· August 18, 2008 I obtain Colin’s blood tests from May 5. I look for evidence of toxic exposure. His Gliadin IgG f is high: a level of 105.6. Anything higher than 55 indicates positive, anti-gliadin IgG antibodies which can occur after indoor mold exposure.

· September 18, 2008 Colin gets a palate expander due to the mouth breathing that developed from the swollen adenoids.

· September 29, 2008 I study Reagan’s blood tests from October 1, 2007 to search for clues to mold exposure as the cause for his hearing loss and tinnitus. (Vertigo had not set in at the time of these blood tests. They were taken 4 months after initial exposure.) His Hgb level was elevated at the time as was his Alk Phos level, which was elevated to 309 with the healthy range 37-250. In addition, his Potassium level was low and C-ANCA level was equivocal for antibodies, and a re-test was suggested by the lab but not ordered by the neurotologist.

· September 2008 Our dog Pippen seems unusually sick. His eyes are redder than they have ever been. Brandon becomes sick again with cold symptoms. I notice my tongue is black, my foot joints hurt, and 3 bumps appear on my right hand 2nd knuckle. I take Ryan to the doctor for a herpes-like rash around his mouth. Brandon’s rashes are back, as are Colin’s hand rashes. Colin’s blood sugars become elevated.

· October 4, 2008 I seek the counsel of a toxicologist due to recurring symptoms. He explains the seriousness of the 320,000 spore count and explains that mold hides behind walls and in crawl spaces. He advises us to vacate the home. We leave Saturday night at 8:45 pm.

· October 5, 2008 Chris and I conference call with toxicologist and leading environmental physician Dr. Michael Gray. They explain the seriousness of the spore count and the bacteria which synergize with the mold spores creating a general contamination in the home. We throw away all remaining clothing and begin the process of creating a new, clean, environment.

· October 25, 2008 Colin’s previous symptoms reappear. We wonder about re-contamination of the new environment. The toxicologist suggests chemical sensitivity. This commonly occurs in individuals exposed to high levels of mold. The de-toxifying capability of the body is compromised and therefore is unable to cope with normal, everyday toxins such as pesticides, fragrances, carpet chemicals, etc.

· October 29, 2008 Colin’s symptoms intensify. He complains of headaches, numbness in his hands and feet, pain in his chest and abdomen. He writes in his journal that he is the sickest boy in the world and there will never be anyone who can help him. His hands are bloody from the rashes. I call the toxicologist once again. He suggests bacteria from our contaminated house may have colonized in his nasal cavities and digestive track. X-ray reveals mass in his upper left nasal cavity. We intensify probiotic and immune boosting supplements.

· November 2008 Reagan continues to suffer from migraine headaches, chronic dizziness, sore throats, and nosebleeds. Ryan still struggles with his rash. Kaitlyn asks to leave school due to headaches. Brandon complains of dizziness and nausea. I am struggling with memory loss and depression as well as compromised ability to multi-task. I sense the need to seek medical help through Dr. Michael Gray in Benson, Arizona.

· December 3, 2008 First appointment with Dr. Gray. UV light shows numerous fungal colonies on Colin and Reagan’s bodies. He finds polyps in their nasal cavities. He explains more about the reality of our mold exposure and long-term effects. I begin to think about relocating to Arizona to have the other children seen and begin the intensive treatment protocol.

· December 2008 Our 3 oldest daughters begin to connect their long term symptoms with the mold exposure. All of them lived in the home at some point during and after the first remediation. Connections are made with symptoms beginning as far back as 2000. Symptoms include: mood disorders, thyroid issues, anemia, memory loss, depression, inability to focus, rashes, sore throats, endometriosis, hair loss, and more.

· January 2009 5 of the children and myself begin intensive treatment in Arizona. 2 more children join us mid-January. All 11 of us test positive for the presence of aflatoxins.

· February 1, 2009 Chris drives a U-Haul full of mattresses and radio equipment to Tucson. We move into a furnished rental home with the hope of recovering as a family. Within hours we have trouble breathing. Several of us develop rashes and Brandon has 3 nosebleeds. Something is wrong with the home.

· February 2, 2009 Most of us sleep outside. We hear from the owner that pesticides were recently used for termites. We vacate the home and flee to a nearby hotel. We begin a search for a safe home free of pesticides and mold.

· February 16, 2009 We move into a tiny 3-bedroom home in a remote area of Tucson. The home is new and never been sprayed. We buy air mattresses. 7 of us sleep in one room. We begin again.

· February 17, 2009 We begin the regimen of nasal sprays, supplements, diet changes, and exercise. We consider staying in Arizona for another year.

· August 14, 2009 We move into a larger 4-bedroom home, determined to continue the rigorous work required to recover.

· September 15, 2009 We receive mold testing results which show the house is clear and safe for our family. We did thorough testing upon learning of numerous plumbing/mold issues in the neighborhood.

· October 4, 2009 We "celebrate" our one-year anniversary of vacating our home. We reflect as a family on our progress and our remaining health issues.

Charcoal, Cream, and Hydroxy B12

I will go into the specifics of our treatment at a later point in time but let me share three interesting responses I have seen in the children since we began this regimen 5 days ago.

Our 9 year-old Colin has had chronic chapped lips for more than a year now. It was the last thing on my list to treat in the midst of so many serious illnesses. Chapstick did nothing. When he was checked out by Dr. Gray last month his lips showed numerous fungal colonies under the UV light. The other kids had colonies elsewhere but not on their lips. This week he began using a charcoal cleanse in the shower daily.He used it on his lips as well.  His lips are now healthy. 

Our 7 year-old Brandon has had rashes on his arms since last December. Raised bumps is the best way to describe this particular rash.  It was altering the pigment. The UV light showed the chitin which indicates the rash is fungal. In 2 days of using the ketoconazole cream his skin is smooth and the remnants of the rash barely visible. It's important to keep using the cream for 4 weeks once the rash is barely visible as the rashes will re-appear. Reagan (12) has had chronic low-grade migraine headaches for more than a year. He rarely mentions them. He has learned to live with them as they are unlike his brother Colin's which have earned us trips to the ER. One of the prescriptions which came from Key Pharmacy in Washington State involved a Hydroxy-B12 diluted nasal spray. It is to be used at the first sign of a headache. One spray per nostril and every 20 minutes until the headache subsides.  Reagan tried it this week. He kept up with it every 20  minutes. He only needed to use it 3 times and the headache was gone. 

Yesterday he asked for the spray and used it twice.  He told me this is the first time he has found relief since these headaches started last year.

Reagan

I remember the first day Reagan was dizzy. November 1, 2007.

October of 2007 had been spent trying to cope with the loud ringing in his left ear. We tried steroids, even a steroid injection directly into his ear. Now that I understand the interaction between steroids and fungus, I would refuse. But fungus was far from our thoughts. November 1st was a Friday. He was headed to school late, as usual. He begged me to turn around. "I'm dizzy." He grasped at his head. "I think I need to throw up." His tone of voice had changed. No longer quiet and reserved, there was an urgency and desperation to his voice.

I turned around on Deer Creek Road. Little did I know I was turning around from life as we once knew it. He would not return to 6th grade. Or 7th grade. Or 8th grade.

I didn't connect the day with Halloween until months later. In retrospect, I feel sure the high amounts of sugar served as a trigger for the mold poisoning to go to the next level.

Two nights later the dizziness turned into massive vertigo and vomiting. All night long. I can't describe the horror of watching your precious 11-year-old child wretch in agony for hours on end.

I had been sensing the need for a second opinion. The vertigo pushed me to take action. I grabbed an appointment with an ENT doctor at Children's Hospital in Denver for Wednesday. "If we can just get into the hospital maybe they'll send us to someone more qualified to help," I reasoned.

Sure enough, the ENT took one look at him, saw the nystagmus (involuntary eye movements) and his pale color, and admitted him to the Emergency Room for observation. I asked for the specialists I had studied on the Internet. Each one saw him. Each one shook their head. They were baffled. They offered to do an exploratory surgery on his ear. There was no real reason to go exploring, so they sent us home.

The car ride home was an hour long. I called my mom. I remember sobbing these words, "I'm afraid to take him home." I just didn't know the real reason why.

Sure enough, we got home and the attacks began again. Attacks with underlying dizziness 24 hours a day. Our neurotologist, believing it to be Meniere's Disease, offered to perform surgery to place a shunt behind the ear to drain what he believed was excess fluid. In desperation we agreed.

We agreed to two more surgeries after that. Meniere's Disease seemed like a reasonable diagnosis to us. Ear ringing and vertigo are classic signs. I didn't know to consider poisoning. Last fall, researchers in a pathology lab at Harvard University were hospitalized after drinking tainted coffee. Their symptoms? Ear ringing and dizziness.

Reagan recovered well from the shunt surgery. We began rehab to restore his balance. He still had an underlying level of dizziness, but didn't have a major vertigo attack with vomiting until Thanksgiving day. We started to carry him after that. Walking was too difficult. We took the next step for treatment of Meniere's Disease. Surgery injecting the toxic drug Gentamiacin into his left ear. The goal would be to kill the 8th nerve and thereby eliminate any chance for vertigo. Again, our desperation dictated our decision. No questions asked.

He learned to walk again in an adult rehab wing of the hospital. He was still struggling to fall asleep. The Gentamiacin seemed to make the chronic dizziness worse. I read much later that increased dizziness is a common side effect. The doctor prescribed Valium. Reagan had used Valium off and on as we tried to help him fall asleep. It didn't really help. We were just so anxious to relieve his suffering.

The 4th day in the hospital I decided it was time to take him off the Valium. I told him it would be better to stay up all night together than depend on a drug that only made him drowsy and hindered his ability to walk. It was tough to get him off. It took a few nights of tears till 2 in the morning before he learned to sleep on his own. He was still dizzy. Still crying at night. But at least he was off Valium. The day after the withdrawal he learned to walk. Not a coincidence, in my mind.

Upon our return home his dizziness worsened yet again. The rehab doctor called to check on Reagan. "Perhaps he needs a psychologist," he counseled. Instead, we tried another Gentamiacin injection. One week before Christmas.

Christmas morning Reagan was no better. In fact, his level of dizziness had increased. We waited to open presents as we watched him bang his head into the couch, sobbing. His dream of restored health by Christmas had died.

I joined a Meniere's Disease forum. I asked if there were any other 11-year-olds out there with the illness. I received a phone call the day after Christmas. A mom from Michigan whose son was diagnosed at age 9. It was 7 years prior and he was doing well. I felt encouraged, but my spirits soon dropped as she described his symptoms. Vertigo attacks similar to Reagan but no dizziness in between. She was shocked to hear about Reagan. Something seemed very very wrong.

I called our neurotologist the next day to report Reagan's lack of progress. His response marked the first of many I would receive from medical experts.

"He needs tough love. Tell him I want him to get up and get moving." And then the dagger in my heart, "He was fine in the hospital." The first of many intimations from a variety of medical experts that I was the problem. The truth behind his reference to the health of our home was hidden to him and to me.

I contacted the Cleveland Clinic. I found a doctor who seemed to know more than most about pediatric ear disease. I had no reason to believe Reagan's ear was not the problem. The doctor recommended a neurotologist in Denver. It took two weeks to get an appointment.

"I want to leave him alone for 4 weeks," the doctor prescribed. Four weeks of watching my son dig his nails into my arm each night as he tried desperately to transition into a world of unconsciousness, his only break from the dizziness that kept him clinging to video games and puzzles. Anything to distract his mind.

I called the new doctor during those 4 weeks. Told him the dizziness wasn't letting up. The next dagger.

"Don't make his dizziness about you."

I continued to search for answers. If Meniere's Disease did not include chronic dizziness, then what was wrong with my son? I contacted a vestibular specialist in Michigan.

"I think a vestibular disorder has been created on top of an existing vestibular disorder," she surmised. She contacted the head of the vestibular department at the Mayo Clinic, who in turn contacted me. "Does he have chronic dizziness with periods of extreme dizziness? Almost like an attack?" "Yes," I said. Almost shouted. The first person who wasn't shocked. Who, in fact, described my son.

"I suspect he has a vestibular migrainal issue," the doctor concluded. He suggested, "Watch for trigger foods like chocolate, artificial sweetener, and MSG, and follow up with a pediatric neurologist."

During those weeks and months Reagan learned to survive by listening to books on CD, working on puzzles, and playing video games. Zofran no longer worked for the nausea. We used Phenergan suppositories. The toughest part of his day? Falling asleep. It took until 2:00 am most nights. I learned that I could sleep on his floor at 11:00 for a couple of hours. Reagan would wake me so that I could hold him just right and massage his forehead in just the right place until he finally fell asleep.

One night he woke me up, just like always, and told me that he thought of writing himself a letter.

"What would it say?" I groggily asked.

He answered softly,

"It would say, 'Dear Reagan,

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

Somehow he had come to a place of deep spiritual understanding about suffering, and I knew from that moment on that no matter the future of his health, his ultimate future was secure.

Still unaware of any connection with his environment, and still confident that the medical world would provide an answer for us, I took him back to a neurologist. Again, doubt was expressed that any child can be chronically dizzy. This young resident had no interest in my other children's illnesses and quickly suggested a counselor. He agreed to prescribe an anti-seizure medicine commonly used for migrainous vertigo, but made it clear that Reagan and/or I was the problem.

That appointment was in April. Reagan had been dizzy for 4 months. Two of our other children were out of school and one was coming home frequently. It's hard to believe that it all seemed coincidental. Hard to believe we would keep trying surgeries and drugs when we were slowly being poisoned by toxic mold. Hard to believe unless you're the one living it.

Our story soon unfolded as documented in our timeline, and we began our journey of recovery.

Reagan's dizziness has become part of his life. He used to wear sunglasses in the house. He doesn't anymore. He still struggles to fall asleep and struggles to open his eyes each morning, but he rides his bike, lifts weights, and dreams of joining the CIA.

He continues to de-tox. We see "stuff" come out of his ear frequently. Lots of rashes appear and then disappear. We're learning what he can tolerate food-wise. One theory that captured my attention recently comes from environmental physician Dr. Allan Lieberman.

"Most physicians will evaluate a patient with acute onset of tinnitus (ear ringing) and vertigo (dizziness) with a thorough neurological evaluation, including brain MRI to rule out uncommon but serious diseases of the brain. Although ear ringing and dizziness can be associated with serious central nervous system disease, the majority of cases are more transient and neurological evaluation fails to uncover any overt disease process.

This is true of most cases that we see at The Center. A comprehensive Occupational and Environmental Medicine evaluation is usually able to identify the illusive causes. We find that exposures to common airborne, food, or chemical triggers very often sets off the ear ringing and/or dizziness in these patients. One of the many causes of these problems is the Herpes simplex virus, which literally lives in the cranial nerves of the brain. When the body’s defenses are weakened by any stress, including allergy, the virus can activate, resulting in the onset of symptoms."

This caught my attention, because last December Reagan's IgG for Human Herpes Virus, HHV6, was 1:640. The normal range is less than 1:20.

A severe mold exposure causes dormant viruses to become active. The interior terrain becomes a breeding ground for all sorts of viruses, fungi, and bacteria. Toxic mold and its contaminants cause an array of illnesses, and Reagan is living proof.

I'm confident we'll get our answers and Reagan will thrive one day. He may have a "limp," but I have no doubt that great things are in store for him. After all, this had to happen to somebody, and he's the best one for it.