Mold and Pets
When Shannon's parakeet Gabriel died within 9 months of moving to our home in Colorado we should have taken note. Gabriel was a healthy bird up until our move. When my friend's two pets got ill shortly after moving to her new home the first question the vet asked was "has their environment changed recently?". Veterinarians are far more attuned to the issue of environmental illness than traditional medical professionals.Soon after our bird died our two cats got sick. Each diagnosed with a urinary tract infection. One of our later parakeets Dreamer had a strange fungus all over his face. I didn't know it was fungus at the time. In retrospect it is clear. I know this is hard to believe but he chewed his foot off. And lived. Several years later our dog Pippen was diagnosed with Type 1 diabetes. I doubt he had a family history of type 1 but I can't say for sure. Pippen's health declined steadily after our major exposure in May of 2007. While already blind, his eyes reddened severely and he chewed off some of his fur. Our pets were letting us know all along that something was wrong in our home. We just didn't know to listen.
Grumbling in the Desert
It's ironic we find ourselves in the desert. Egypt is starting to look good. We're the Israelites and Egypt is the home that made us so sick. Somehow the comforts of a contaminated home sound better than camping in the desert. We're not really camping but it feels that way. We have a card table, a desk, air mattresses and 3 tents. We tried to clean our mattresses but it was an uphill battle as Brandon continued to get nosebleeds just having them outside. We tried to buy a couch but the kids reacted to it so we took it back. Since this 1800 square foot home is all tile we'd like to add an area rug. We're hesitant to do that. A home with a brown couch and pictures on the walls sounds better than ever. Until I remember. We were seriously ill. We are still seriously ill. Three doctors have told us repeatedly we will not get better if we are in a toxic environment. When I remember why we're here and dig deep enough to believe something better is in store for us I can stop grumbling....maybe not for long...but for a moment.
Simple Pleasures
We have internet. The last 3 weeks have been the darkest yet. We have made it through. As I reflect on this latest chapter I stand amazed that a connection to the internet and a new phone mean this much. I am grateful to all of you who continue to stand with us.
5 days in One House!
We have made it 5 days in our rental home. It has been a rough week for a variety of reasons but I am confident we can stay here. We still don't have internet and won't until Wednesday so I will continue to publish excerpts from Dr. Marinkovich's paper on fungal illness:.
IV. Diagnosis
The diagnosis of fungal hypersensitivity syndrome rests on four criteria: Exposure to an identified heavily contaminated source, appropriate symptoms temporally related to exposure, high serum specific IgG levels to molds, and finally a positive response to therapy. IgE antibodies are usually not involved in hypersensitivity phenomena secondary to exposure to high dose antigen such as fungi, foods and occupational exposures to organic matter (Fink, 1984). Skin tests are, therefore of little, if any, value. The fourth criterion for diagnosis is an essential feature of all medical therapy, namely, the clinical improvement resulting from a fungal avoidance regimen. When this condition is not met, the diagnosis must be revisited. Either avoidance is inadequate, therapy is insufficient or the diagnosis is wrong.
A. Antibodies or lack thereof
Everyone is exposed to fungi in daily living and, therefore, antibodies to fungi are found in nearly everyone. They have been shown to be protective, except for patients whose immune systems are inadequate in response. These patients are extremely susceptible to fungal infection. In such cases, e.g., AIDS patients, cancer patients (especially if on chemotherapy), transplant recipients on immunosuppressive drugs, and patients with acquired or congenital immune deficiency, especially involving cellular immunity, fungal colonization can be life threatening. In most healthy individuals, the constant exposure to ambient fungal spore levels is handled easily by normal mucosal cleansing mechanisms and the ever-vigilant immune system. Ill effects do not generally occur in the normal population. However, this statement is not true for all otherwise “healthy” individuals. The extreme example of this is seen in certain occupational fungal diseases, e.g., farmer’s lung (Emanuel et al., 1964), malt workers pneumonitis (Riddle et al., 1968), etc. where enormous exposures occur on a daily basis and virtually everyone can be symptomatic. In such cases the inflammatory changes produced in the lungs can cause severe destruction of lung tissue, extensive colonization of lungs with fungi and bacteria, and slow progression to respiratory deficiency and death (Pepys, 1969). Such patients must be treated aggressively with complete cessation of further exposure, high doses of systemic and inhaled antifungals (Stevens et al. 2000) (Nark et al., 2003) and the judicious use of systemic steroids to reduce inflammation and arrest the progressive damage or remodeling of the lungs (Kaltreider, H.B., 1993). Steroids actually encourage fungal growth by suppressing the inflammatory reaction and their use must be carefully monitored to walk the tightrope between too much steroid encouraging fungal growth and too little allowing progressive destruction of lung tissue.
B. Individual Variations in Response
The levels of fungi in contaminated homes and office buildings may be quite high but are generally not nearly as high as encountered in the special occupational situations previously mentioned above. Still they are high enough to cause serious illness in non-immuno-compromised individuals (Burr, 2001). A considerable variation in response to moldy homes among members of the family is common. In some cases all members of the family are affected with some small variations in severity and in the organs infected, e.g., skin, lungs, sinuses, gastrointestinal tract, headaches, etc. In other instances the variation in severity of illness can be considerable among family members, one person at one extreme may be quite ill, even disabled, while another at the other extreme has little to show for the exposure. This is understandable in that not all rooms in the house may be equally contaminated and those sleeping in the rooms with highest levels of contamination are likely to have more severe symptoms. Variations may be seen in the amount of time each individual spends at home. And then there is genetic polymorphism where each individual is endowed with his own unique immune responsiveness and two individuals in the same family or bloodline may respond quite differently to the same exposure. In studies done with serum sickness where normal, healthy individuals were given different volumes of horse serum intravenously, some individuals developed symptoms (Von Pirquet, 1951) with relatively low volumes of serum while others required ten times more serum to show the same symptoms. The conclusion of these studies was that everyone was susceptible, but there is a dose dependent susceptibility among different individuals.
Sustained exposure to airborne fungal spores at levels far below the occupational disease levels in otherwise normal healthy individuals will produce symptoms in some percentage of patients. The exact percentage of susceptible individuals is likely to be low, perhaps under 1% of the population. But with the widespread contamination of home and workplaces in this country, with perhaps 30% of the schools, homes and offices involved, the actual number of affected individuals can easily reach one million. One percent of the population is about three million individuals and a third of these would be one million. This is an epidemic. Unfortunately, many of these cases are not recognized by the medical community and go undiagnosed and untreated. Thanks to the Internet and the media publicizing the results of litigation involving mold cases, the public’s awareness of the problem has grown. Hopefully, this will induce more health caregivers to learn about fungal illness.
IV. Diagnosis
The diagnosis of fungal hypersensitivity syndrome rests on four criteria: Exposure to an identified heavily contaminated source, appropriate symptoms temporally related to exposure, high serum specific IgG levels to molds, and finally a positive response to therapy. IgE antibodies are usually not involved in hypersensitivity phenomena secondary to exposure to high dose antigen such as fungi, foods and occupational exposures to organic matter (Fink, 1984). Skin tests are, therefore of little, if any, value. The fourth criterion for diagnosis is an essential feature of all medical therapy, namely, the clinical improvement resulting from a fungal avoidance regimen. When this condition is not met, the diagnosis must be revisited. Either avoidance is inadequate, therapy is insufficient or the diagnosis is wrong.
A. Antibodies or lack thereof
Everyone is exposed to fungi in daily living and, therefore, antibodies to fungi are found in nearly everyone. They have been shown to be protective, except for patients whose immune systems are inadequate in response. These patients are extremely susceptible to fungal infection. In such cases, e.g., AIDS patients, cancer patients (especially if on chemotherapy), transplant recipients on immunosuppressive drugs, and patients with acquired or congenital immune deficiency, especially involving cellular immunity, fungal colonization can be life threatening. In most healthy individuals, the constant exposure to ambient fungal spore levels is handled easily by normal mucosal cleansing mechanisms and the ever-vigilant immune system. Ill effects do not generally occur in the normal population. However, this statement is not true for all otherwise “healthy” individuals. The extreme example of this is seen in certain occupational fungal diseases, e.g., farmer’s lung (Emanuel et al., 1964), malt workers pneumonitis (Riddle et al., 1968), etc. where enormous exposures occur on a daily basis and virtually everyone can be symptomatic. In such cases the inflammatory changes produced in the lungs can cause severe destruction of lung tissue, extensive colonization of lungs with fungi and bacteria, and slow progression to respiratory deficiency and death (Pepys, 1969). Such patients must be treated aggressively with complete cessation of further exposure, high doses of systemic and inhaled antifungals (Stevens et al. 2000) (Nark et al., 2003) and the judicious use of systemic steroids to reduce inflammation and arrest the progressive damage or remodeling of the lungs (Kaltreider, H.B., 1993). Steroids actually encourage fungal growth by suppressing the inflammatory reaction and their use must be carefully monitored to walk the tightrope between too much steroid encouraging fungal growth and too little allowing progressive destruction of lung tissue.
B. Individual Variations in Response
The levels of fungi in contaminated homes and office buildings may be quite high but are generally not nearly as high as encountered in the special occupational situations previously mentioned above. Still they are high enough to cause serious illness in non-immuno-compromised individuals (Burr, 2001). A considerable variation in response to moldy homes among members of the family is common. In some cases all members of the family are affected with some small variations in severity and in the organs infected, e.g., skin, lungs, sinuses, gastrointestinal tract, headaches, etc. In other instances the variation in severity of illness can be considerable among family members, one person at one extreme may be quite ill, even disabled, while another at the other extreme has little to show for the exposure. This is understandable in that not all rooms in the house may be equally contaminated and those sleeping in the rooms with highest levels of contamination are likely to have more severe symptoms. Variations may be seen in the amount of time each individual spends at home. And then there is genetic polymorphism where each individual is endowed with his own unique immune responsiveness and two individuals in the same family or bloodline may respond quite differently to the same exposure. In studies done with serum sickness where normal, healthy individuals were given different volumes of horse serum intravenously, some individuals developed symptoms (Von Pirquet, 1951) with relatively low volumes of serum while others required ten times more serum to show the same symptoms. The conclusion of these studies was that everyone was susceptible, but there is a dose dependent susceptibility among different individuals.
Sustained exposure to airborne fungal spores at levels far below the occupational disease levels in otherwise normal healthy individuals will produce symptoms in some percentage of patients. The exact percentage of susceptible individuals is likely to be low, perhaps under 1% of the population. But with the widespread contamination of home and workplaces in this country, with perhaps 30% of the schools, homes and offices involved, the actual number of affected individuals can easily reach one million. One percent of the population is about three million individuals and a third of these would be one million. This is an epidemic. Unfortunately, many of these cases are not recognized by the medical community and go undiagnosed and untreated. Thanks to the Internet and the media publicizing the results of litigation involving mold cases, the public’s awareness of the problem has grown. Hopefully, this will induce more health caregivers to learn about fungal illness.
From Andrea's husband Chris...
Due to some circumstances beyond our control, Andrea hasn't been able to update her blog. We are living in a small town in Arizona that has little Internet access.
Thanks for your prayers for us. More news is forthcoming. We are in a rental now that we believe is clean and will help us stage our assault on the maladies we've been facing. Have a great weekend.
cf
Thanks for your prayers for us. More news is forthcoming. We are in a rental now that we believe is clean and will help us stage our assault on the maladies we've been facing. Have a great weekend.
cf
Reality
I am overwhelmed beyond words. I have finally connected with the reality of our situation and cannot imagine how we will make it through. We are dealing with some intense neurological issues as well as physical setbacks. I am hanging on to this verse.
We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us." 2 Corinthians 1 (8-10).
We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us." 2 Corinthians 1 (8-10).
Fungal Illness
The following is an excerpt from a paper published by Dr. Vincent Marinkovich, an immunologist from Redlands California who died in 2007 of pancreatic cancer.
I hope to include the entire work at a later date. (The introduction makes me think of the salmonella outbreak at the peanut plant.I read recently that there was a leak in the roof at the plant.) At any rate it is one of the best treatises I have seen on the issues surrounding mold exposure.
There is much about the health effects of fungi that is not understood. Exposure to high ambient fungal spore levels in a water damaged home or building is, more likely than not, a mixed bag. Not only are more than one fungal genus likely to be present but bacteria such as Legionella or Actinomycetes may be present in sufficient quantities to add complexity to the resulting symptoms (Fink, 1984). Endotoxins are frequently found in abundance when Gram negative bacteria abound as when sewage is the source of the water (Rylander, 2002). In addition, insects such as mosquito larvae or other mold-feeding insects (mites) may be contributing to the airborne organic particle burden. Even large rodent populations have been discovered in older, run-down, water damaged homes and buildings. All of these can contribute to the disease patterns seen in patients exposed to "fungi" in water-damaged structures.
Innate and Adaptive Immunity
Fungal exposure itself can produce a confounding array of symptoms as different elements of the body’s defense systems are triggered. Early in the course of exposure, the innate immune system can be activated as endotoxins or fungal elements enter the body tissues. This inflammation can proceed without any involvement of the adaptive immune system with its antibodies and activated T-cells (Kauffman, et al, 2000). However, after a few days or weeks of antigen presentation on an inflamed mucosa, the adaptive system is likely to become involved as antibodies and T-cells specifically reactive to fungal antigens are generated. This will add to the inflammation of the affected tissues. And, finally, fungal elements become directly involved if mycotoxins or other inflammatory triggers are formed that can cause toxic injury to specific organ systems. One need only be reminded of such fungal compounds as alcohol, lysergic acid (LSD), antibiotics, cyclosporin or mushroom toxins to appreciate the ability of such organic molecules to cause symptoms.
Physicians who treat patients with mold related problems are often challenged by the variations in the disease symptoms and the multi-organ involvement that are presumably the result of exposure to environments heavily contaminated with fungi. They may accept the likelihood that fungal exposure is the cause of their patient’s symptoms, but not understand the underlying pathophysiology. Still, an attempt is made to treat the patient, essentially by utilizing various programs that remove the patient from the fungi. Over time, they learn that the clinical patterns seen in such patients are consistent, the diagnosis can be accurately made and the response to therapy is very good.
There are other physicians who deny that fungi as encountered in homes or office-type workspaces are capable of causing illness. These physicians generally are not primary care givers and can dismiss the patient’s complaints because of their apparent complexity without a consequence. They are better designated as theorists who base their negativity on arguments that the lack of sufficient evidence-based proof of a causal relationship of fungal exposure to human disease proves that such a relationship is not possible. They dismiss all case reports (Marinkovich et al., 1975) (Fink et al., 1971), epidemiological studies (Dearborne, 2002) (Etzel et al., 1998) and clinical observations of experienced clinicians as worthless and such patients as malingerers or psychiatrically disturbed (Hardin et al., 2003). They seem to lack the vision to accept the challenge of the possibility that injury to multiple organ systems may result from exposure to large amounts of fungal derived materials (such as spores and/or mycotoxins) in a home or office environment. They are wrong and they can do a great deal of harm. First in denying the patient’s symptoms, and secondly by blocking disability requests from such patients injured by exposure to fungi in their workplaces. They are guilty of using poor scientific logic because it is close minded. Such thinking has no place in a medical setting where there are sick patients who need help.
III. Clinically relevant characteristics of fungi:
Fungi are nature’s recyclers. They are extremely abundant in nature, carrying the mandate to reduce all organic matter to its basic constituents. The organisms are armed with several features that allow them to satisfy this mandate. They are microscopic cells which are numerous in all climates where temperatures are above freezing; they exist in two forms, an active, growing form and a dormant, hardy, drought resistant and easily wind-borne form (the spore, also known by the scientific name of conidia). They are superbly versatile and can grow on virtually any wet surface. They secrete their digestive enzymes (Kurup, 2003), digest their environment and absorb their necessary foodstuffs from their immediate, digested environment. Among the products of digestion are toxins (known as mycotoxins because they are derived from fungi), which help them control the potential intrusion of competing organisms into their space. Each of these characteristics plays a role in the disease patterns seen in fungal illness.
The job of fungal spores is to broadcast the organism widely in the environment. They are tiny, lightweight and easily airborne. They are in all natural environments the most prevalent particles in the air at all times. Even at the height of a pollen season, the pollen particles are outnumbered ten to one by fungal spores. The human body is marvelously equipped to deal with such large numbers of potentially infectious particles in the air. The filtering capacity of the nasal mucosa easily removes the larger spores, greater than 10 microns in diameter, from the inspired air. Once trapped on the mucosa, the tiny hairs on mucosal surfaces (cilia) move the particles toward the throat where they are swallowed and destroyed by the acid in the stomach. Some of the smaller spores, less than 10 microns in diameter, may be inhaled into the lungs (Geiser et al., 2000). But even here the normal self-cleansing functions of the lung, which includes its own cilia and mucus production, are mobilized and particles are moved upward and swallowed. A small subset of the tiniest spores, less than three microns in diameter, may be inhaled and trapped in the alveoli and terminal bronchioles beyond the reach of the cilia. They are handled by the scavenger cells in the lungs, the alveolar macrophages.
This is extremely important to understanding the pathophysiology of fungal exposure because once the fungal elements have reached the alveoli they have entered the tissue space from which they can be absorbed into the blood stream.
I hope to include the entire work at a later date. (The introduction makes me think of the salmonella outbreak at the peanut plant.I read recently that there was a leak in the roof at the plant.) At any rate it is one of the best treatises I have seen on the issues surrounding mold exposure.
There is much about the health effects of fungi that is not understood. Exposure to high ambient fungal spore levels in a water damaged home or building is, more likely than not, a mixed bag. Not only are more than one fungal genus likely to be present but bacteria such as Legionella or Actinomycetes may be present in sufficient quantities to add complexity to the resulting symptoms (Fink, 1984). Endotoxins are frequently found in abundance when Gram negative bacteria abound as when sewage is the source of the water (Rylander, 2002). In addition, insects such as mosquito larvae or other mold-feeding insects (mites) may be contributing to the airborne organic particle burden. Even large rodent populations have been discovered in older, run-down, water damaged homes and buildings. All of these can contribute to the disease patterns seen in patients exposed to "fungi" in water-damaged structures.
Innate and Adaptive Immunity
Fungal exposure itself can produce a confounding array of symptoms as different elements of the body’s defense systems are triggered. Early in the course of exposure, the innate immune system can be activated as endotoxins or fungal elements enter the body tissues. This inflammation can proceed without any involvement of the adaptive immune system with its antibodies and activated T-cells (Kauffman, et al, 2000). However, after a few days or weeks of antigen presentation on an inflamed mucosa, the adaptive system is likely to become involved as antibodies and T-cells specifically reactive to fungal antigens are generated. This will add to the inflammation of the affected tissues. And, finally, fungal elements become directly involved if mycotoxins or other inflammatory triggers are formed that can cause toxic injury to specific organ systems. One need only be reminded of such fungal compounds as alcohol, lysergic acid (LSD), antibiotics, cyclosporin or mushroom toxins to appreciate the ability of such organic molecules to cause symptoms.
Physicians who treat patients with mold related problems are often challenged by the variations in the disease symptoms and the multi-organ involvement that are presumably the result of exposure to environments heavily contaminated with fungi. They may accept the likelihood that fungal exposure is the cause of their patient’s symptoms, but not understand the underlying pathophysiology. Still, an attempt is made to treat the patient, essentially by utilizing various programs that remove the patient from the fungi. Over time, they learn that the clinical patterns seen in such patients are consistent, the diagnosis can be accurately made and the response to therapy is very good.
There are other physicians who deny that fungi as encountered in homes or office-type workspaces are capable of causing illness. These physicians generally are not primary care givers and can dismiss the patient’s complaints because of their apparent complexity without a consequence. They are better designated as theorists who base their negativity on arguments that the lack of sufficient evidence-based proof of a causal relationship of fungal exposure to human disease proves that such a relationship is not possible. They dismiss all case reports (Marinkovich et al., 1975) (Fink et al., 1971), epidemiological studies (Dearborne, 2002) (Etzel et al., 1998) and clinical observations of experienced clinicians as worthless and such patients as malingerers or psychiatrically disturbed (Hardin et al., 2003). They seem to lack the vision to accept the challenge of the possibility that injury to multiple organ systems may result from exposure to large amounts of fungal derived materials (such as spores and/or mycotoxins) in a home or office environment. They are wrong and they can do a great deal of harm. First in denying the patient’s symptoms, and secondly by blocking disability requests from such patients injured by exposure to fungi in their workplaces. They are guilty of using poor scientific logic because it is close minded. Such thinking has no place in a medical setting where there are sick patients who need help.
III. Clinically relevant characteristics of fungi:
Fungi are nature’s recyclers. They are extremely abundant in nature, carrying the mandate to reduce all organic matter to its basic constituents. The organisms are armed with several features that allow them to satisfy this mandate. They are microscopic cells which are numerous in all climates where temperatures are above freezing; they exist in two forms, an active, growing form and a dormant, hardy, drought resistant and easily wind-borne form (the spore, also known by the scientific name of conidia). They are superbly versatile and can grow on virtually any wet surface. They secrete their digestive enzymes (Kurup, 2003), digest their environment and absorb their necessary foodstuffs from their immediate, digested environment. Among the products of digestion are toxins (known as mycotoxins because they are derived from fungi), which help them control the potential intrusion of competing organisms into their space. Each of these characteristics plays a role in the disease patterns seen in fungal illness.
The job of fungal spores is to broadcast the organism widely in the environment. They are tiny, lightweight and easily airborne. They are in all natural environments the most prevalent particles in the air at all times. Even at the height of a pollen season, the pollen particles are outnumbered ten to one by fungal spores. The human body is marvelously equipped to deal with such large numbers of potentially infectious particles in the air. The filtering capacity of the nasal mucosa easily removes the larger spores, greater than 10 microns in diameter, from the inspired air. Once trapped on the mucosa, the tiny hairs on mucosal surfaces (cilia) move the particles toward the throat where they are swallowed and destroyed by the acid in the stomach. Some of the smaller spores, less than 10 microns in diameter, may be inhaled into the lungs (Geiser et al., 2000). But even here the normal self-cleansing functions of the lung, which includes its own cilia and mucus production, are mobilized and particles are moved upward and swallowed. A small subset of the tiniest spores, less than three microns in diameter, may be inhaled and trapped in the alveoli and terminal bronchioles beyond the reach of the cilia. They are handled by the scavenger cells in the lungs, the alveolar macrophages.
This is extremely important to understanding the pathophysiology of fungal exposure because once the fungal elements have reached the alveoli they have entered the tissue space from which they can be absorbed into the blood stream.
Twist of Fate?
In the midst of our search for temporary housing I am reminded of the quest we made to find a home in 2000. We were looking in the Colorado Springs area. The search was narrowed to two houses. Both beautiful. Both large. Both fairly new. Chris loved the one on Fawnwood. He and our two oldest daughters had discovered them on their cross-country house-hunting venture. Chris called me. "We like both of them. But I think the one on Fawnwood would work better. It backs up to a horse farm. It's on a quiet street. You would love it". Sounded great to me. "Go for it", I said. He put a bid on the home and offered the asking price. We were elated. He called the next day. They had begun their trip back to Chicago. "We didn't get the house". I was stunned. Another family put in a bid on the same day. (those were the days). The homeowner chose the other family. I could hear his disappointment. A week later I flew out to Colorado with him. We looked at the "other home". It was 5500 square feet. More than adequate to hold our family of 10. But as I walked through I had an ominous feeling. There were plenty of windows but it felt dark. We eliminated it as a possibility. We looked at other houses. Nothing worked. Nothing was big enough. We returned to Chicago and questioned our decision to move. We had already sold our home. It happened before we even put it on the market. (those were the days). So we HAD to move. The 'dark' house started to look brighter. What if we painted and re-carpeted? We bought the home. We moved into it June 7, 2000. A twist of fate? I don't think so. A stroke of bad luck? I don't think so. A bigger plan? I think so.
The first thing I did to decorate the new home was to have a verse painted on the wall in the entryway. " He gathers the lambs in His arms and carries them close to His heart." I believe it more than ever.
The first thing I did to decorate the new home was to have a verse painted on the wall in the entryway. " He gathers the lambs in His arms and carries them close to His heart." I believe it more than ever.
Update
The home fell through yesterday afternoon. We were surprised by this and disappointed. Today we're confident that it's best for all of us. I think we have found a vacation rental that would work for our immediate future. I continue to learn more than I ever intended about disappointment including the fact that there is , indeed, life after it.
Home Search
We've owned 2 homes in our 26 years together. The first was a small 1800 square foot home in suburban Chicago. The second our 5500 square foot home in Colorado. In both cases we chose based on location, size, floor plan, and aesthetics. Wall-to-wall carpeting was a bonus. As long as it had a working stove of some sort I was happy. As we've searched for a home this week floor plan and aesthetics are of no consequence. I don't care about the neighborhood or schools. I could care less about views or wall color. Actually the less wall color the better. The less carpeting the better. Electric appliances are now preferred. Furnace and water filters are now important. The use of pesticides has become the first question. The most critical issue: we must smell nothing when we enter. So much has changed in such a short time. The reality of our inflammatory condition has set in and the road to healing has now begun. I'm grateful we reacted so violently to the pesticides in the other home. We stayed 2 days instead of 2 months. After a search that included a 100 mile radius in and around Tucson we have settled on a relatively new home in Vail. It's nothing what I pictured but everything I now know to be healthy for our family. In a few days (if all goes well) we will put our suitcases away for the first time in 2 months.
Timeline of Events
We are still searching for a place to settle. Today the realtor suggested adding a clause in the rental agreement which allows for a possible adverse health reaction. Seems like a good idea.
I have written a timeline which details the years preceding our journey to Arizona. It is titled "Our story" and can be accessed under Helpful Links.
Black Mold Exposure: It Can Happen to You
A new documentary will be released in April of 2009 about black mold exposure.
ABOUT THE FILM
Black Mold Exposure follows Michael Roland Williams, filmmaker, and Karen Noseff, founder and designer of Fortune Denim, struggling to regain their livelihood and well-being after they were unknowingly exposed to high levels of various molds that had infested Karen’s apartment. The entire 264-unit apartment community was evacuated and closed indefinitely. Michael and Karen claim to have developed allergies and sensitivities to virtually everything, causing them difficulty in finding “safe” housing as well as numerous other bizarre problems that have continued over the last five years.
A growing number of people from all ages and walks of life claim mold made them ill while physicians, lawmakers, and medical associations dispute the validity of these claims. Most of the symptoms of those claiming illness from mold can be caused by, and diagnosed as, any number of other illnesses. There are no standardized methods to measure what molds, at what exposure levels, over what period of time, might cause any given person to become ill.
BLACK MOLD EXPOSURE explores the bizarre illnesses associated with exposure to toxic mold and the film participants’ difficult task of regaining their health and lives in an atmosphere of political and social intolerance and disbelief.
BLACK MOLD EXPOSURE is a first-ever look into the lives of those claiming to be ill from mold and the controversial and volatile climate surrounding it.
Quick Update
We came close to finding a home today. It was perfect with the exception of a steam shower/sauna in the home. The mildew smell in the shower is too risky for us.
We are learning so much about our specific needs. Lots of ceramic tile, little landscaping and lawn care, high ceilings, and out of the city. We have a realtor looking for us. She is going above and beyond. We have lost a number of critical things due to our flight from the rental home so we're trying to get new diabetes supplies, contact lenses and such.
The nurse from Kristen's cactus spine removal called me today. (see previous post: flip flops in the desert).She volunteered last week at the local Extreme Home Makeover location. She talked with the staff about our story. They told her to write a letter about us. I can't believe she tracked me down to ask for more information.
I know some of you are following us closely this weekend and I want to tell you how much I appreciate your concern.
We are learning so much about our specific needs. Lots of ceramic tile, little landscaping and lawn care, high ceilings, and out of the city. We have a realtor looking for us. She is going above and beyond. We have lost a number of critical things due to our flight from the rental home so we're trying to get new diabetes supplies, contact lenses and such.
The nurse from Kristen's cactus spine removal called me today. (see previous post: flip flops in the desert).She volunteered last week at the local Extreme Home Makeover location. She talked with the staff about our story. They told her to write a letter about us. I can't believe she tracked me down to ask for more information.
I know some of you are following us closely this weekend and I want to tell you how much I appreciate your concern.
Certainties amidst the Uncertainties
Today is a new day with new possibilities. The 8 of us are crammed into a small 2 bedroom hotel suite in Sierra Vista waiting to see what lies ahead for us as a family. Whenever uncertainty prevails it helps to reflect on the "knowns". Here's what I know.
1.We were seeing progress with the treatment. We have seen regression being off of it.
2. Diet impacts health. One example. Yesterday was Kaitlyn''s 11th birthday. We bought a cake with pink flowers on it. Reagan had one piece and had the worst vertigo attack he has had in months. When it comes to our health it makes sense that food, air,and water matter.
3. We belong together as a family. It's better now that Chris is with us.
4. The pesticides caused serious regression. I have now learned that the type used were pyrethroids. These can cause neurological and respiratory damage. Breathing became difficult within hours after moving in. We saw instant neurological changes in our youngest son Brandon. I hope to discuss the impact of toxins on the brain at a later point. One interesting fact: toxins can cause noise in the brain making it very difficult for a child to focus.
5. Symptoms are our ally. If it weren't for our symptoms we would have stayed longer.
6. Multiple Chemical Sensitivity often shows up 8 months after a mold exposure. Dr. Gray said we fit the pattern he has seen frequently.
We have narrowed our search to newer homes with ceramic tile floors. Yesterday was especially difficult and discouraging. We will see what today holds for us.
1.We were seeing progress with the treatment. We have seen regression being off of it.
2. Diet impacts health. One example. Yesterday was Kaitlyn''s 11th birthday. We bought a cake with pink flowers on it. Reagan had one piece and had the worst vertigo attack he has had in months. When it comes to our health it makes sense that food, air,and water matter.
3. We belong together as a family. It's better now that Chris is with us.
4. The pesticides caused serious regression. I have now learned that the type used were pyrethroids. These can cause neurological and respiratory damage. Breathing became difficult within hours after moving in. We saw instant neurological changes in our youngest son Brandon. I hope to discuss the impact of toxins on the brain at a later point. One interesting fact: toxins can cause noise in the brain making it very difficult for a child to focus.
5. Symptoms are our ally. If it weren't for our symptoms we would have stayed longer.
6. Multiple Chemical Sensitivity often shows up 8 months after a mold exposure. Dr. Gray said we fit the pattern he has seen frequently.
We have narrowed our search to newer homes with ceramic tile floors. Yesterday was especially difficult and discouraging. We will see what today holds for us.
An 18 Month Old Baby Hospitalized due to Toxic Mold
This is a picture of my youngest son in the hospital. This picture was taken during his first hospitalization in March of 2007. He had a severe lung infection in both lungs, reactive airway disease which was later diagnosed as severe, uncontrolled Asthma and an ear infection. He was on oxygen for nearly 3 days, IV fluids, IV antibiotics, Albuteral every four hours around the clock with a nebulizer, Prednisone, Pulmicort etc. Little did we know, two more hospitalizations would occur within the next year. Click HERE and HERE to read about this 18 month old baby's toxic mold story.
Providential Phone Call
We are spending our 3rd night in a hotel in Benson. We know nothing more about our future than we did yesterday. At this point there's not a place on earth that feels safe. We've considered camping as an option. Hotels don't seem safe. New homes don't seem safe. Old homes don't seem safe. The biblical concept that earth is not our home has taken on new meaning. The owner of our rental home graciously tracked down all of the specifics regarding the pesticides. I am waiting to hear from our toxicologist regarding potential contamination of our belongings. Until 3 days ago I knew nothing about our vulnerability to pesticides. Now I do. As a friend pointed out, better now than the day after we purchase a home. Nonetheless, we are struggling. Deeply. In the midst of it all I received a phone call this afternoon. The kids and I had visited a church January 25th. I filled out a visitor's card and searched out a welcome table after the service to drop it off. I knew that it could be awhile before I'd hear.It's a big church and I would understand if I never heard at all. Besides, I can always call them. But in my darkest hour...at 2:30 this afternoon...my cell phone rang. It was a pastor from the church. I don't know what kind of day he was having or why he called me today. I wonder if it was hard on this particular Wednesday afternoon to reach out to a stranger. I do know that he sat and listened as I cried and shared. He understood that there was more to our story than he heard in those 5 minutes. He offered to help in whatever way he could. But, in reality, he already has. He was the instrument God used to let me know that we are never alone. Never.
MCS awakening
We had a bit of a setback this weekend. Chris arrived Saturday morning in a U-haul filled with mattresses, kitchen supplies, and radio equipment. We drove the 20 minutes to our next rental home with eager anticipation. We were beginning a new chapter. One filled with stability, improved health, and a return to “normal” life as a family. Eagerly my daughter and I set out all of the medications in the kitchen. We had an entire pantry to set them in! No more living out of suitcases. The kids were ecstatic. 2 hours into the move Megan noticed some new rashes spreading rapidly. Within four hours Brandon came running to us with a bloody nose. (We have not seen a bloody nose in the 2 months since we started the ketaconazole nasal spray.) Soon he had a second one and by bedtime had a total of 4. My heart was sinking. By 2 in the morning I found myself unable to sleep due to a severe tightening in my chest. By morning I noticed unexplainable “cuts” all over my hands. Kristen woke up with a sore throat. A couple of the other children woke up with labored breathing. Colin had a strange welt on his back. The back of his hands were breaking out. We called our doctor and also talked with the woman who had re-located to Arizona after a mold exposure in the Virgin Islands. She is about a year ahead of us with all of this. From these conversations we determined the cause to be chemical rather than mold. We wiped down a utility closet with white vinegar after we found weed killer on the shelf. Weed killer is particularly dangerous to immune compromised individuals like ourselves. (An interesting note: the plastic bottle does not “contain” the toxins. This is why it is important to keep all pesticides out of the indoor home environment.) We moved all of our mattresses away from the new carpet in the bedrooms and into the tiled main living area. This moved us away from possible formaldehyde exposure. By the end of the Super Bowl it was clear that not only were the Arizona Cardinals going down, we were too. We moved our mattresses to the backyard and a number of us slept outside Sunday night. We were all able to breathe better by morning but my rashes were escalating as were Megan’s. We stayed outside most of the morning and still the rashes were spreading. The owner came to the house and offered to remove all the new carpeting, wipe down the house in vinegar, whatever we needed. He told us the area around the house had been sprayed with the weed killer a few days before we moved in. And several weeks ago the home had been sprayed for termites inside of the house. Mystery solved. The inside and outside were uninhabitable for our family. It takes 6 months for the outside pesticides to lose their toxicity in the immediate environment. Far longer inside. We are now in the elite group of those who suffer from MCS (multiple chemical sensitivity). This is a common diagnosis for those who have had a high level of mold exposure. Our 4353 genetic pattern pre-disposes us to this. Chris does not have this pattern so he will do better with pesticides. We knew we could not afford to stay another night. Chris stayed behind to sort through the situation while we drove to Benson to a hotel proven to be a safe haven for us. This is where I am as I write this and I know nothing about our next step. I do know that next time we will ask about pesticides as well as prior water damage in the home. I know that someone reading this may do the same. I am devastated but unwilling to allow this to deter us from our goal of restored health for our family.
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