This is for mold survivors everywhere: past, present and future. I want to tell you that there is hope because if we could survive this and end up thriving, so can you!
If we had stayed in our house and not figured out what was poisoning us we would be dead now. We survived a deadly toxic mold poisoning and for that I am grateful. I am also grateful for all that we have learned in the process of finding the mold, getting out of the mold, and detoxing our bodies from the toxins.
We were living in our home for 4 1/2 years before we figured out that the house itself, or the toxic mold behind the walls, was what was making us sick. We never saw it and never smelled it because it was hidden behind the walls of a fiberglass tub.
Some of our symptoms were frequent colds, throwing up, stabbing pain on the right side near rib cage that was mistaken for gall bladder pain, asthma, chronic bronchitis, ovarian cysts, heart problems, sinus infections, pain, seizures, chronic fatigue, brain fog and dyslexia.
For a more complete list of the signs and Symptoms of Fungal Exposure (Mycotoxicosis) visit the Mold Survivor website.
My son's room was adjacent to the bathroom with the mold and he was the sickest in the house. He went from an active, intelligent eleven year old to a sickly boy in a wheelchair who could no longer eat without getting sick, was in constant pain, was having seizures, facial tics, would fall down walking, was tired but could not sleep, couldn't read a book or attend school. He was diagnosed with Lyme Disease and tested positive twice for Lyme. He also tested positive for Bartonella, HHV-6, Rocky Mountain Spotted Fever (RMSF), mycoplasma fermentis, Babesia, strep, ehrlicia, mercury and lead poisoning. I don't doubt that he had all these things… but what the doctors never tested for was mold. I believe the mold held his immune system down and made him susceptible to many other infections.
It took me 9 months after my son got very sick to find the mold. During that period of time, he had seen several doctors. I called the NYS Dept of Health three times asking if this could be environmental because even the dog was sick… they assured us that we were not in any danger from any environmental causes without ever bothering to visit our home or help us test. They brushed me off. Which is the same thing they did when I called them after we found the mold. I wanted to alert them to our experience so they could warn other families. They told me the testing I did was invalid and there was no proof that mold was ever making us sick.
We tested for radon, we tested the water, we got rid of toothpastes with fluoride, used organic shampoos, conditioners, soaps, and cleaning products. We started eating totally organic, no gluten, no sugar, no dairy, no red meat, no fatty fish that might have mercury, and no meat that may have antibiotics or hormones. My son was in treatment for Lyme and his health continued to deteriorate at a rapid pace. His white blood cell count was 0.8 for 3 months in a row. Anything below 3 is dangerous. I was terrified. I kept searching.
I read the book “Surviving Mold” by Dr. Ritchie Shoemaker and everything began to make sense. This book described what had been going on in my house. Right down to the spontaneous nosebleeds I had seen in both of my children. I did VCS testing on my whole family and my son and I failed the test, further confirming we were sick with mold poisoning.
Remember, my son and I had been home bound, stuck in that house for 9 months. So of course, the two of us were the sickest. My husband and daughter had some symptoms… but nothing like we had. The only reason we ever went out was to go to a doctor's appointment. I had been getting sicker and sicker myself for many months. My doctors thought it was stress because my son was so sick. I was becoming dyslexic and having trouble remembering things. Not normal forgetfulness… but things like not knowing what side of the road to drive on and not knowing right from left.
I did not have a doctor who would run the tests for mold that Dr. Shoemaker recommends in his book, but my son had a pediatrician who was willing to do the testing. She ordered every test we could do in New York State. The testing not only confirmed that he was sick from mold, but that he was the worst kind of genotype, the 4-3-53. Most people get 2 genes from that test, but he only had one. That meant he had inherited the worst gene from both parents and that I had at least one 4-3-53 gene, too.
I tested the house for mold using the Environmental Relative Moldiness Index that Dr. Shoemaker recommends in his book. I used the lab he suggests which is Mycometrics…
I found another lab that does the same test for less money and EMSL is the lab I recommend to people.
Go with Mycometrics. I have known people to do both labs and Mycometrics picks up more molds that EMSL sometimes misses.
On a scale of (-10) to +20, we were a 20.3 on the ERMI scale. We had learned enough to know that if we wanted to see if mold was what was making us sick, we had to leave the house and take nothing with us. Mold gets on your stuff and if you bring your stuff with you, you bring the mold with you and you will not get well.
I had an environmental company come out and do moisture testing, tape testing and air testing as well as a visual inspection. The stachybotrys found in the air on the second floor where that bathroom was was 234,000 per cubic meter. There is zero tolerance for stachybotrys because it has been linked to sudden infant death syndrome and is one of the deadliest toxic black molds out there. I don't know how any of us were alive.
Some people have success saving their clothes by washing them in 1-2 cups of ammonia and no detergent(one or more times). I had success with it on some of our clothing. We took some clothes to the laundromat, washed them and went to the Panorama Motel that wound up being our home for the next 10 1/2 months. We showered in one room, changed into our clean clothes and slept in another room. Four days later my son was visibly better. He was walking around, slowly at first and playing for short bursts of time. It took him 4 1/2 months to fully recover. He is still doing well, today.
We remediated our home. Many said it could not be done, but through a lot of hard labor, a lot of research and experimentation, we got the mold out and replaced moldy building materials with safer materials. We threw out most of our possessions, what we didn't toss we put in storage and I can't go near it. It's like kryptonite to me. My husband did most of the work himself and it took many months and over $35,000 later, we had a home I was no longer reacting to. We moved back into our home in February of 2012.
I worked hard on getting to my health back. I feel good most of the time, now. And I am getting better every day. It is a blessing to be aware of the toxins in this world. I feel bad for all the people who have blinders on and don't know why they are sick.
But it took a long time, a strong focus on health, faith, a positive attitude and all the things I learned researching online and from networking with other people who have gone through this kind of upheaval.
In August of 2012, 18 months after getting out of the moldy house, I still had chronic fatigue, severe brain fog and dyslexia, digestive problems and pain, and hypersensitivity to mold and chemicals. I was a prisoner in my own home-going out was always a risk because 70-80% of the buildings and people were making me sick.
My recovery didn't happen overnight because I didn't get sick overnight.
I lived in that home for over four years… and many moldy houses before that.
This site is for sharing things that helped me get well.